7% The question everyone asks is, ‘When did you first know?’ We usually say that we knew something was badly wrong before David was two years old.

8% When David wasn’t howling, he was adorable. The first time we dared face the idea that there might be something wrong with him – something trivial, something easily righted – he was sixteen months old.

The whole street was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustice of existence.

Every ear infection had been chased away with antibiotics, but they always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our GP agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.

That could make him indifferent to sounds and slow to talk. That appeared to explain all our baby’s problems. And glue ear was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them, the aural equivalent of Draino.

9% His unusually active mind was diverted by unusual entertainments. Bristol Zoo is a second home to hundreds of families with toddlers. The walls are high, the gates are guarded, scooters and bicycles are banned and there are no cars.

And no dogs – it’s the only park in the city where a two-year-old can hop, crawl, stagger, slide and roll across the grass without getting smeared in something unpleasant.

​It’s also the only park with lions and crocodiles, of course, but moderate parental vigilance ought to be enough to ensure no one gets eaten. Parental vigilance failed, one day just before Christmas.

10% I called David’s name, once or twice, half-heartedly. I was too scared to care whether strangers thought I was a bad father for losing my child, but I knew there was no point in shouting. He had never come at our call. Never, not once.

David probably hadn’t even noticed my absence. He’d be doing the usual David things. It had to be the Insect House. And it was. He was tucked into a corner, where he wouldn’t be trampled, lying on his back and gazing at the mirror ball.

I tried to hug him, but he ducked away. He wouldn’t leave the Insect House, until a break came in the ambient music. I was holding the hood of his anorak – he wouldn’t take my hand – as I guided him towards the exit and thinking that his glue ear couldn’t be too bad if he could hear that music… he lunged forward and disappeared up a woman’s skirt.

‘Sorry!’ I said. “Sorry, he thinks you’re his mum.’ I had no idea if this was true…

‘Stop it! Stop it!” she said, jerking her leg, shouting at the squirming form. She slid a hand down her waistband to dislodge him, but it was obvious David had taken firm hold of something. I could only hope it was a thigh.

I didn’t know if I should reach inside her skirt. It might seem too forward: I’m not sure about the etiquette in that situation.

David was beaming when he emerged. Since no apology of explanation would be enough, I simply dragged him away, while his victim gaped after us.

“How was the zoo?” Nicky asked later.‘David had fun,’ I said.

14% Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his cot.

Nicky (on the computer) showed me the page, and I was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM IV section on Autism.

David would have to match at least six of them, from a list of twelve. It didn’t look good. David had achieved top marks on the Diagnostic Criteria for Autistic Disorder.

< My Thoughts > “DSM IV list of twelve…”

Catherine Lord, PhD. (2018), Director of the Child Mind Institute and member of the APA’s DSM-V work group explains that with the DSM IV criteria taken ‘literally’, anybody in the world could qualify for Asperger’s or PDD-NOS. That the goal of the revision was “to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be intellectual disability or aggression.”

But, Harslad, et al. (2014) caution that with the new model, DSM V, those previously diagnosed according to the DSM-IV may no longer meet the qualification for services. Clinicians have concerns that the new DSM-V will disproportionately exclude those with certain cognitive abilities, those of certain ages, and those with certain levels of functioning.

Because the ‘checklist’ has changed to a “2-Group” model, Mandy (2016) fears that those who most need ‘state’ services won’t get them. He feels that the real issue is ‘threshold’, the ‘level’ of symptoms to which everyone can agree. His concern is that ‘borderline’ people and those assessed at lower ‘levels’ of measure will be left out.

Mandy states that he is hopeful, however, that the DSM-V will now provide a new and improved picture of ‘females’, previously missed by professionals. That meeting this new diagnosis criteria will result in reducing the ‘gender-based inequities’ the DSM-IV couldn’t.

​And, increase better awareness of how females seem to cope with social situations differently than males. He fears that females, while able to ‘forge’ an ‘identity’ which allows them to ‘pretend to be normal’, they are subsequently putting themselves at risk for damaging behavior.

Note: If your child has received a ‘new’ DSM-V diagnosis, which supersedes the DSM-V diagnosis, then you may be required by school districts, developmental programs, or others, to provide a letter stating the current diagnosis. When you are asked to provide this documentation, clarify exactly what they expect to see. Get that request in writing, if you can. Just saying…

14% I made a last attempt to laugh it all off, by underlining fragments of the criteria which could apply to me. ‘I’ve got dodgy social skills,’ I said.

‘I like to be solitary. I’ve got a million rituals. He’s not autistic; he’ll just grow up to be a journalist.’ ‘Stop trying to make a joke of it,’ she told me. ‘We need to talk to a doctor.’

CLICK on READ MORE for the rest of the story... Smiles!​

15% The doctor was looking at David with a face of raw pity. ‘I can’t say whether it’s autism,’ he told me. ‘That will take a full assessment. But your son does have a severe mental disability. I’m sorry.’

I swallowed. It was as though we’d been falling into an abyss, turning slowly through the void, for many weeks. And now we’d hit the ground. The doctor told us to go back to the GP and insist on seeing a specialist. David’s needs were urgent.

Because David couldn’t talk, we still thought of him as a baby. He drank hot milk through a baby bottle, and outside the house he never walked but always rode in a buggy. He was three feet tall, but he was a baby.

17% When we got home (from taking son James to the nursery), David would choose a video, always Postman Pat, and I would take a shower…it wasn’t as if he could get out of the house. He was just a baby.

So when I stepped out of the shower one Tuesday and realized I could hear cars and people in the street outside… I peered down the stairs to see the front door was wide open.

Barefoot and dripping, in a ragged toweling robe, I called out as I walked down the stairs: ‘Nicky, is that you? Are you back?’

She didn’t answer. I could hear Postman Pat…I stuck my head into the sitting room.

David wasn’t there. Calling to him was pointless… With my arms folded across my chest and doing that high-stepping trot which only barefoot adults on stony tarmac can achieve, I tried to guess where David would go.

…I caught sight of David: he was marching with a purpose to the grocery shop. I grinned. It was a relief to know he was safe, and I admired his cheekiness. ‘Hi! Excuse me, little fellow! You want sweeties? You have to give me money, yes? No money, no sweeties. You give to me.’

And then there was a shriek, so blood-chilling that Vince must have thought he’d accidentally hurt the little shoplifter…

‘He’s with me,’ I shouted, and tried to give Vince a thumbs up as I scooped David off the floor and kept my robe shut at the same time. Vince pressed the sweets into David’s hand a free gift. The screaming didn’t stop, even though David crammed a couple straight down his throat.

< My Thoughts > “I tried to guess where David would go.”

Chantal Sicile-Kira, The Autism Advocate reminds us that… “children on the autism spectrum are at a higher risk of being hurt, victimized or wandering off. Children with autism do not appear to have a safety 'antenna' built in, and their sensory processing does not effectively work to help them in the area of safety and crisis prevention.”

18% James started primary school that September. Six days later, David’s assessment began…

19% ‘Let’s go home,’ I whispered to Nicky. ‘We don’t have to put him through this.’ ‘You’re not making this any easier, she hissed back.’

He was smart, he was bright, he could work out buckles and locks and gadgets, so he didn’t have ‘learning difficulties’ – he just couldn’t talk. It would hold anybody back. Once that was sorted out, he’d be flying. No one ever quite said: ‘Face facts. Get real. You’re only fooling yourselves.’

20% ‘I’m Mary,’ she said, suddenly holding out her hand to me. ‘From social services.’ I goggled at her. ‘We haven’t asked for a social worker.’ ‘But when you do,’ she said, with…a hopeless little smile, ‘it’ll be me.’

'Why? David’s very well cared for. Surely the doctors haven’t told you any different?’ ‘It’s routine,’ said Mary. ‘David has special needs, so obviously a social worker has to be available. ‘We don’t want that!’

The social worker shrugged, and simpered. It’s routine,’ she repeated. ‘You might want David to have respite care, or to have him fostered for short periods.’ ‘David lives with his family,’ I said, my voice shaking, ‘and we’re all coping very well.’ ‘That might change,’ she said.

21% We made the doctor say it again. ‘Your son is probably not autistic, or only mildly so. He has a communication disorder, and that has to be addressed. But my opinion is that he’s outside the autistic spectrum.’

This was straightforward headline news, as far as I was concerned. ‘NIGHTMARE OVER … Screaming Boy of Bristol is Not a Fruitloop, Say Medics.’ Nicky was less trusting.

26% David’s melodramatic attitude to transitions made house hunting difficult. We’d decided to move – house prices were finally picking themselves up off the floor, and we wanted to buy a place with a garden while we could afford one.

27% When David arrived at his new home, his mum was waiting on the doorstep with a tube of Rolos and a bottle of hot milk, David knew a good thing when he saw it – he strolled inside like a millionaire tourist returning to a favorite hotel.

30% David’s case was on hold. We’d dragged him through the diagnosis because the doctors agreed the best long-term hopes lay in ‘early intervention’; now the council was dodging its responsibility to help him.

31% At the end of the first term, I was driving David home from Music Space school when the nursery-rhyme tape ended. Before I could flick it over, a clear, high voice sang, “In the bad, bad lands of Australia!’

I called Nicky at the office. I’d just heard our son’s first words. Some little boys say Dada’ … David had launched into a music-hall number about a faulty boomerang.

Brain regions involved in movement, attention, planning and memory consistently showed activation when participants listened to music -- these are structures that don't have to do with auditory processing itself. This means that when we experience of music, a lot of other things are going on beyond merely processing sound, Abrams said.

Music is amazing…we apparently use a different part of the brain to understand and enjoy music. As a parent, we carry a toy cassette player which plays classical music for Sonny when he is in stress mode, or coming out of a seizure.

As a special education teacher, I have had students with autism react favorably to hearing music while they are learning a task. In fact, there was a new classroom aide with the annoying habit of listening to her MP3 player through earbuds during classtime.

Instead of calling her on it, I motioned for her to put one of her earbuds in the student’s ear when he started screaming in protest at being asked to work a puzzle. The look on the child’s face was priceless.

Truly, it was like flipping a switch. He calmed down and became compliant and cooperative. Often times, discoveries like this don’t last…but, this one did. The parents couldn’t believe how the music changed his behavior, but soon he had his own MP3 player and tunes.

59% That summer, David was offered respite sessions at an NHS children’s unit called Church House, a mile from his school. Six months earlier, we would have turned the offer down. We didn’t want to admit we needed respite from our own child. It felt like a confession of failure.

71% He has learned to say a lot that he doesn’t understand. Words have meaning for him in the same ways as music: he invokes them for specific situations.

When he acts out his videos, David takes almost all the parts and recites nearly all the script, but a key role is reserved for Mum.

72% The first time I saw him act out a whole movie was in a playpark, when he was six. In the whole performance, he barely uttered a recognizable word: the script was reduced to shapeless phonetics.

I could sometimes guess what he was trying to say – as he flung himself off monkey bars shrieking, ‘Ah-ooo, a-a eee!’ I knew he was imitating Mowgli’s shout of ‘Baloo, catch me!’ But it was obvious David didn’t understand what the words meant, and didn’t care.

Within a few months, that had changed. He was starting to shape words with the same precision he’d applied to song lyrics for years.

Now he could shout, ‘Baloo, catch me!’ and sound like his life depended on it. But he still had no idea what the words meant. The medical term for this use of language is ‘echolalia’, which means ‘speaking in echoes’… a complex phenomenon which serves many purposes.

< My Thoughts > “…use of language is ‘echolalia’ in autism”

Echolalia is briefly defined as a stereotyped repetition of another person’s words or phrases. Susan Stokes (see References) encourages us that “The presence of echolalia in children with autism can be a positive indicator for future meaningful language development, at least on a ‘surface’ level.

She says that use of ‘echolalia’ can be for both communicative and non-communicative purposes. “Sophisticated utterances are usually repeated without a clear or complete understanding of the meaning of that utterance.”

Stokes continues that, communication can be used for conversational turn taking, initiation of interacting vocally, requesting and affirming responses to another person. Example: When asked, “Want to go swing?” the child answers… “Want to go swing?”

When echolalia is used for non-communicative purposes the communication may not appear relevant to the situation or context. It may be triggered by a setting. Such as walking into the lunchroom the child may say to no one in particular, “Everyone find a seat and start eating.” Then there are the utterances that are used to direct one’s own actions. “Wash my hands. Turn on the water. Get the soap.” and so forth.

We had a foster child who was stuck in the echolalia stage of communication. One day he came home from school happily singing the name “Victoria”, “Victoria”, “Victoria”, over and over again in a loop. The next day I asked his teacher if she had a new student.“Yes,” she replied rather surprised, “Her name is Victoria.” Smiles.

87% We walked all the way to the green bus and back. ‘That was a long walk,’ I said. ‘No green bus!’ his face crumbled. ‘No green bus!’ ‘Green bus all gone. Goodbye green bus,’ I said. ‘Goodbye green bus,’ he snorted.

That moment was the biggest development in David’s mind since the day he started naming objects. ‘Goodbye’ gave him a way to think about the past.

It might seem as if I’m attaching too much importance to one word, but the change in David’s thinking was breathtaking. By the time we’d walked home, he’d worked out that we could discuss all the day’s events.

89% The only viewpoint in the whole world was David’s. He couldn’t believe that anyone saw anything, or felt anything, except what he was seeing and feeling. We’ve spent years trying to understand that.

Nicky heard son James answer the phone one Saturday: the pharmacist was calling. ‘Can I speak to David Stevens?’ he asked.

‘No’, said James, ‘he can’t talk. He’s autistic.’

< My Thoughts > ‘No’, said James, ‘he can’t talk. He’s autistic.’

Our Sonny seems to understand much of what he hears in the home and on TV. Being non-verbal doesn’t mean he can’t make sounds, laugh or grunt “Uggh” when he’s annoyed. Or mumble something that sounds like “Uh-huh” for okay, thanks, or? Smiles.

To this day, when we explain that Sonny is non-verbal, the normal reaction a person has is to begin shouting so Sonny can hear them. “No, no, he’s not deaf’ I say, ‘he hears and understands (mostly)…he just can’t talk.” Oh my!

Typical early ‘non-verbal’ communication behavior is to drag the nearest person to what the child wants. Then they’ll tantrum until you figure out what they want. Susan Stokes (see References) explains that in order to develop an appropriate communication intervention program for the non-verbal child with autism, one must determine the child’s current communication abilities.

One way to start is to ask the key questions – “Does the child seem to desire communication?” “Does the child exhibit intentional communication?” “In what way does the child communicate?”

90% The tragedy concealed in those half-dozen words, “He can’t talk. He’s autistic,’ seemed much more real, Nicky told me, when she heard them spoken by our other child.

98% When people wonder, ‘How do you cope?’ the answer is that David loves life, and this is possible because of the staff at Briarwood, and Church House, and all the others who do far more for him than we would dare ask.

Stokes, S., Autism Consultant. Increasing Expressive Skills for Verbal Children with Autism. Funded under a contract with CESA7 & funded by a discretionary grant from the Wisconsin Department of Public Instruction. Retrieved 8/12/2018.

For further information on ‘echolalia’, non-verbal, and other stereotypical communication by children and adults with autism, please see under “What to do While You Wait” – BLOG #3A Motor & Communication; BLOG #4B (Speech Therapy), on my website www.sarasautismsite.com.

Autism Belongs, Book 3 in the School Daze Book Series, by Sharon Mitchell; eBook 2015 Edition with < My Thoughts > by Sara Luker (Note: This is based on fictional characters.)(13% indicates location in the Kindle version of the book, instead of page numbers.)Excerpts from the book ~

9% “Let’s go for a walk.” Tomas knew that his wife had been cooped up in the apartment for far too long. When Manny was younger, she used to take him out often, but as he’d grown bigger and stronger and more unpredictable, it was no longer safe for her to go out alone with him.

Tomas and Maria strolled along, careful where they placed their feet. From past experience they knew that the sound of crunching leaves sent their son off the deep end. They did not need to tell Manny; his footsteps automatically missed the fallen leaves, even when he seemed to be peering upward toward the sun’s rays.

They walked the same route every time – had to. Any deviation bothered Manny so badly. When he was younger, he’d throw himself to the sidewalk, flailing and wailing if they tried taking a different street. Tomas would simply hoist the screaming child over his shoulder and they’d head home. Now that Manny had some size on him, this was harder to do. Plus, strangers looked at a tantrumming two year old in one way, but a half grown child doing the same thing was an entirely different matter.

10% Immediately, Manny’s arms came up at his sides, his hands elevated and that keening noise started in the back on his throat. His parents knew what this meant. Manny might not speak, but he communicated, for sure. At least, sometimes.

< My Thoughts >“Communication…school age”

Franco, Davis & Davis (2013) believe that because children with autism don’t develop early ‘intentional’ communication skills, they will develop flapping and challenging behaviors such as hitting, as they grow older. They say that the older child needs to be taught three important communication behaviors: vocalization, eye gaze, and gestures. They are considered the basic components of prelinguistic requesting and commenting acts. That older children who may never develop complex spoken language can still increase a beneficial, clear consistent means of communication. Studies show that there are positive outcomes for communication treatment planning with older children.

10% “All right, son. I understand. Papa made a mistake is all. We’ll go straight.” He pointed down the way they had originally been heading. Manny’s noises stopped and he walked ahead of his parents on what he knew was the correct path. Tomas grabbed Maria’s hand and gave it a squeeze. “Just hang loose and it’ll be all right. Show him we’re relaxed and we’ll walk right on by.”

Nope, not gonna happen. That’s what Manny’s body language said. He planted himself firmly in front of the bakery window and pressed his nose to the glass. He made little noises but not the ominous ones that forewarned of an eruption. These were more like happy noises, contented ones. If all their son wanted was a quick peek in a bakery window, then Tomas and Maria would oblige. How long can you wait, nonchalantly regarding bakery goodies?

11% The gentleman was holding open the door. “Go in he said…” Inside the bakery, the woman behind the counter followed Manny’s gaze. “Got it. I see which one you want.” The man said, “That’s Ellie, she owns the place.”

The bell over the bakery door chimed. Running feet and a boisterous, high pitched voice announced, “Munchkin’s here!”“Hello Munchkin. Just what did you do with my nephew, Kyle?“I’m Kyle, silly.”

“Did you bring your mom and dad?” Mel and Ben hung up their coats and sat at the round table.

The man said, ”Mel, you might be interested in that boy over there…” Mel got his meaning. She was a teacher at a school for kids who learned differently.

13% Mel appeared at their table, kneeling beside Manny. She put a device on the table and rubbed her finger over the glass surface. The picture of the bakery snagged Manny’s attention.

14% “That’s called a social story. A woman named Carol Gray came up with the idea and it really works. I made that one for our son. He used to have trouble transitioning from one thing to another. If he liked something, he never wanted it to end. And, he really likes this bakery. So, we made a story for him. We’d read it before we’d come to the bakery and again when we got here. Then, I’d pull it out just before we were ready to leave. It worked and he got better,” Mel said.

“Our Manny, he does not read.”

​“But he looks at pictures I noticed. You don’t need words to write a story. You can draw stick figures to illustrate what’s going to happen. Just tell him what the figures mean and what is expected of him.”

< My Thoughts >“Carol Gray ….social stories …”

Samuels & Stansfield (2011) remind us that part of the Autism diagnosis reveals the range of impairments in social functioning and social interaction difficulties. Social Stories were first developed by Carol Gray in 1991 as a strategy for sharing meaningful and accurate information about these problematic social situations. Social stories differ from direct social skills instruction by saying and showing what is expected to happen during a specific social event.

​By guiding social behavior, this helps to overcome the fundamental problem of following and interpreting social rules. When the Social Story uses positive language to answer “wh” questions then the outcome is a ‘replacement behavior’. Identifying areas where an ‘age appropriate’ Social Story might be the most effective intervention is the key. (Note: “wh” questions are… who, where, what, when, why, and ‘how’ will you?)

14% Mel tried to explain. “Kids with autism take in things that they see easier than things that they hear. That’s why a story like this helps – the child does not just listen to what we’re saying but they see the visual of what is happening.”

“Kids with Autism? Oh, that’s not our Manny.”

It was Mel’s turn to look skeptical. She raised one eyebrow.

“Where does he go to school?”

“He is not in school. He stays home with us.”

“May I ask why?”

“He is not like other children. He gets upset and he, well, he doesn’t talk.”

“I understand that he does not speak and that he might get upset, but that does not mean he can’t go to school.”

“No. we keep ourselves to ourselves. Manny is our responsibility. We will look after him.” “But, thank you again for your help…”

(Catching up with Tomas and Manny) “She told me that kids with autism like to look more than listen, or something like that.”

< My Thoughts > Visual learners…

Erdodi, et al. (2012) reported that persons with ASD generally have better visual than verbal ability. But, this can depend on the novelty or complexity of the presentation of the new information. Auditory verbal learning, they point out, results in yet another pattern of performance; such as taking extra time and learning context clues. Also, because students can’t seem to organize well, they will have difficulty learning visual lists of words.

The reasons for visual learning preferences, according to Sokhadze, et al. (2017) may be that the thinking (cognitive) activity is related to working memory, which is triggered by visual stimuli. And, because of the abnormal brain connectivity in persons with ASD, it explains why visual details are more important than the picture as a whole. ‘Response selection’ can also be influenced by the novelty of the stimuli. Therefore, a person with ASD will more easily pay attention to a visual prompt before an auditory one. Studies show that a ‘novel’ visual prompt will draw even more response.

14% “Autism?”

“That’s what she said.”

“Wonder why she’d say the word autism if you were talking about Manny, or about her son?”

29% “We were fine, Tomas, although I admit that this is much nicer, these walks and going to the bakery and talking to people. Do you think Manny likes it, too? Is that why he’s calmer because he’s getting out and doing different things?”

"I've never thought of it before. Do you think it’s possible that a kid like Manny could get bored?” with a sleepy Manny bathed, cuddled and tucked into bed, Maria and Tomas had time to themselves.

Maria broached the subject that had been on her mind. “Tomas, what do you know about autism?”

“Not much. I saw that old movie, Rainman when I was a kid. I think on television I’ve seen scenes of people who rock back and forth, bang their heads, and are lost in their own worlds. Why?”

“Because several people now have mentioned autism and Manny. I think they think that he’s autistic.”

“No, that can’t be. No. they don’t know our son. He’s not hopeless like those people.”

“You know Jeff – the guy at the bakery who cooks and fixes computers?”

“Yesh, didn’t they introduce him as Mel’s brother?”

“Yes. He has autism.”

“No, that’s not right. He can’t.”

“He told me so himself today. He seems definite about it. And, he says that Kyle, Mel’s son has autism also.”

Maria shifted her head on Tomas’s shoulder so she could look at his face in the moonlight. “He says that all people with autism are different and that that view I had of autism is only one part, a small part of autism. Jeff says that autism is just one of his characteristics.”

I’ve seen Kyle there. He seems like every other kid.”

According to Jeff, he’s a kid who has autism.”

< My Thoughts > “Looks so normal…”

Hoogsteen & Woodgate (2013) say that “…autism was invisible to the untrained eye yet visible in ways that people deemed as undesirable.” “They have no clue because “C” looks perfectly normal. He walks. He talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.”

Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’. Families seem to experience long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’ looking so normal.

29% They were silent for a while. Then, Tomas asked, “What makes Jeff think that Manny could have autism?”“He asked me why I thought Manny rocked and flapped his hands, didn’t talk and made noises.”

Tomas digested thin information. “Why do you think he does those things?”

“I asked Jeff that if Manny did have autism, would he ever be like Jeff. He said that Manny will need help – special help.” “Then he asked me why Manny is not in school.”

33% “You have been most kind to us. Certainly, we should like to hear what you have to say.”

Mel studied him carefully. “Well,” she began, “life can be especially frustrating for kids who don’t talk. They have no way to make their wants and needs known. Often, it’s up to the parents to play a guessing game; sometimes we are not very good at it, frustrating the kid even more.”

“Tomas nodded. “We see this often, but don’t know what to do. If only he’d just say what it is he’s after.”​“Sometimes we use pictures with kids who can speak to us…”

PECS Picture Exchange Communication System

​< My Thoughts > “PECs & Visual Schedules…”

Picture Exchange Communication System (PECS) uses picture symbols (visual supports on cards, pages or in books) to teach communication skills. The learner is taught to use picture symbols to ask for objects or activities, ask and answer questions, and have a conversation. In 20 – 30 minute sessions, children learn a communication system where they exchange different symbols with a partner as a means to communicate a ‘want’. This intervention is taught in six phases by a trained ‘communicative partner’ and has ‘visual supports’ which can be made or purchased readymade.

Picture Exchange Communication System (PECS) is a great tool in helping all nonverbal children with or without autism communicate without words. PECS is used in a variety of ways–starting with pictures–to allow the child to make choices and communicate his/her needs. When children can communicate and express their needs, behaviors often can be minimalized resulting in a much happier child.

At school, they started Sonny on the PECS system of communication when he was about 8 years old. At first we used the PECS graphics for the items but when he didn’t respond to them, we switched to pictures cut from ads. He is very much a visual learner so I can understand why he liked to see the real image.

The problem for Sonny was that he was not high-functioning enough, nor was he coordinated enough (fine-motor skills such as using pincher fingers…which ASD children often hate to do) to scan a selection of cards…make a choice that fit his needs…and present it to someone in exchange for the item. Too many variables for him, and (big AND) we didn’t know he was having undetectable seizures. Epilepsy was not on the radar at that time.

51% Mel continued. “It’s tough for kids who are nonverbal. They can’t tell us what they want or need, so we have to become keen detectives, watching their behavior and using trial and error.

60% “There is no pill that will make the autism all go away. Sometimes some kids are helped by some meds that allow the child to pay attention better or remain calmer so that they are better able to learn, but it is definitely not automatic that if a child has autism, he will take medication.”

< My Thoughts > “Medication for autism…”

Behavioral interventions have been proven effective and usually approved by most insurance, including Medicaid, medications for autism is another story; especially for older children. Lenne & Waldby (2011) separate the two interventions by arguing that unlike other ‘disorders’ there is a lack of biological markers or pathology tests to verify the need for a certain medication.

There are no clinical practice guidelines or evidence-based medicines found to work for both geniuses and those with extreme impairment. Instead, pediatricians face the complexities and inconsistencies of seeing autism in the clinical setting. Many, it is said, are left to go with their ‘sixth sense’ or ‘gut feeling’ when interacting with patients.

Williamson, E. & Martin, A. (2012) designate three main clusters of conditions which have widely prescribed medications: irritability; (ADHD) Attention Deficit Hyperactivity Disorder-like symptoms, and repetitive behaviors. A cautionary tale, these medications have not been studied for the treatment of autism. they do not treat the underlying disorder of autism, and do have prominent negative, as well as positive side effects.

​Also important would be that parents see to regular monitoring of vital signs and laboratory tests, appropriate attention to diet and lifestyle changes. They add the comment that while two decades ago, autism was considered to be a result of dysfunctional parenting, now autism is treated as a neurodevelopmentaldisorder.

60% “What do we do now?”

Mel returned to the report – “Pretty standard stuff. Exposure to other children, follow the recommendations of a speech/language pathologist, referral to an occupational therapist for follow-up on sensory strategies, social skills training, maintain a language-rich, structured environment, support routines with visuals and work closely with your school.”

“There is not one thing listed here that we don’t do at school and do well. You won’t need to take time off work to run Manny to appointments; the therapists will come right to the school. And, when they aren’t there the school staff will carry on with the programming these specialists lay out.”

“And all this would happen at school.”

“Definitely. All this and much, much more.” Mel’s encouraging expression contrasted with that of the anxious mother and father in front of her.

61% (On the iPad) Manny was watching the story Mel had made about Manny going to the pizza party at school with Kyle.

< My Thoughts > “Social Stories on the iPad…”

Debbie Lee, Assistant Professor in Western Illinois University Education Dept., has reviewed iPad Apps, including those for Social Stories. She recommends demonstrations of these on You Tube, or on other websites, in order to find the one that will work for you.

61% “It’s been a good morning… he’s nice and relaxed.” As the video ended Tomas instructed, “Time to get your coat, Manny. We have to leave now if you’re going to eat pizza with Kyle.”

The first face that greeted them belonged to Mel. She knelt down to eye level with Manny, gave him a soft hello...

Then, a small head ducked out of the classroom door. Kyle.“Manny, come on, aren’t we ever going to eat? We’re waiting for you.”

Mandell & Novak (2005) tell us that cultural influences, experiences with the health system and parents’ beliefs play a role in whether or not a child ever is diagnosed. Often times, they say, parents don’t even know they should be making a decision about their child. Or, they assume that “He’ll grow out of it.” And then, Latino children who are diagnosed were six times more likely to have parents who sought non-traditional treatments. Added to that, the authors believe that clinicians may delay treatment or diagnosis because they don’t believe the parents will be successful in following-through with recommended interventions.==============REFERENCES used in < My Thoughts > are:

Samuels, R., Stansfield, J. (2011). The effectiveness of Social Stories to develop social interactions with adults with characteristics of autism spectrum disorder, British Journal of Learning Disabilities; V40, p 272-285.

1% I never wanted to write this book. I can’t write this book, it hurts too much. But I have to because this book wasn’t there when I needed it. It’s not a human-interest story or a self-help book or an instruction manual on how to raise an autistic child. It’s simply a well-thought-out laundry list of everything I did to help my daughter be the best person she could become and I did it in the dark because this book wasn’t there for me.

My daughter, Carrie, was diagnosed almost seven years ago. With everything. PDD-NOS (Pervasive Developmental Disorder, term now used interchangeably with ASD ), (ASD) Autism Spectrum Disorder, Static Encephalopathy (brain disorder which may or may not be permanent), Bipolar Disorder (experiencing periods of unusually elevated or depressed moods), and in the words of one specialist, Full-Blown Autism. I didn’t even know that last one was a real medical condition.

Fortunately, Carrie was very young when she was diagnosed. She was barely thirteen months old when her pediatrician first mentioned that he was concerned about the fact that she wasn’t reaching her milestones. The fact that she wasn’t able to walk, talk, drink from a cup, or sit up without help should have worried me, too, but she was my smiling, pudgy little baby and I wasn’t very concerned.​It wasn’t until a different doctor voiced his concerns that I really began to wonder.

Over the next several months we saw professional after specialist after expert until finally we were given a final diagnosis: Carrie was somewhere on the autism spectrum and none of the specialists we saw seemed to think she was anywhere close to the high-functioning end of the arc.

Like most parents in my situation, I dove in head first in trying to find out everything I could about autism and how it was going to affect my child.

I didn’t need to know the scientific history of autism, I needed to know how to potty train my daughter. I needed to know how to teach her to talk or what to do when the day finally came that she had to go to school or had a crush on a boy or got her period. Was she every going to have a job, a checking account, and a car payment? All the research that was being done to make discoveries down the road didn’t help me with my daughter’s struggles today.

I am, however, a teacher and a mother who has been there, so this book is simply the strategies that I learned from working with my autistic child.

2% I’m basically telling you like it is the way your best friend would if she wasn’t worried about hurting you and if she didn’t feel like she doesn’t have the right, just because she doesn’t have an autistic child.

It’s time for tough love: your child is autistic. Stop saying he’s “a little bit autistic,” or my favorite, “he’s somewhere on the spectrum.” We’re all somewhere on the spectrum! We’re at the “not autistic” end! And please stop referring to you other children or your autistic child’s classmates as “neuro-typical.” They’re normal. Your autistic child is not. There I said it. Now we can move on.

4% Toolbox. Here are the things that I kept on hand for working with Carrie. Some of these might be godsends for you, some of them might be the stupidest thing you’ll ever try. Nothing here costs more than $20 so try it if you think your child will respond.

Mirrored wrap-around sunglasses, the bigger and the cheaper the better. You might want to get a few pairs of these glasses because some of them are bound to get broken in all the play. The point of the glasses is actually very simple.

​When you put them on they look kind of weird, which attracts you child’s attention, but when he looks at your glasses he will see himself, which is kind of intriguing. More importantly, the glasses are blocking out a large portion of the overwhelming information that is provided by the human face.

When my glasses were not handy, I have even just planted myself in front of my daughter and talked to her with my eyes closed, just so she wouldn’t be so overpowered by the intensity that is the human eye.

Several pairs of white gloves (winter kind, hardware store kind, jazz hands kind, doesn’t matter, so long as they’re white so you can write on them and light-weight enough that you won’t feel stupid wearing them everywhere you go for the rest of your life. I’m kidding. No, I’m not.) the title of the book came from the use of my hand as a visual teaching aid to my daughter.

< My Thoughts > “… talk to the hand…”

When Sonny was younger, he would hold his hand up in front of his face and babble away at it. So talking to the gloved hand would be perfect for him. Smiles.

5% I would show her with my fingers how many words she had to speak. When she was screaming she could watch a countdown on my fingers of how much longer she could scream.

The gloves will be the calendar, the clock, the countdown timer, and more. So stock up. Before I thought to use gloves, all of this was written on my fingers in Sharpie. After I finally thought to use gloves so I would look less stupid with a hand-drawn Technicolor tattoo on both hands, I literally kept all my gloves clipped to my belt loop with a carabineer hook so they would be handy a million times a day.

Yoga ball. A lot of autistic kids DESPISE being off balance due to their weakened proprioception and vestibular senses. So slap him up on that ball and bounce him till his fears go away. I’m just kidding, sort of. The yoga ball will be vitally useful when it comes to physical therapy, occupational therapy games like catching and throwing, and processing verbal commands like, “Roll the ball to me! Now roll it to Daddy! Now roll it to the couch!”

6% El cheapo plastic cups in rainbow colors, but all alike, and maybe five cups of each color. I don’t mean the disposable kind.

We stacked them, we kicked them with our right foot and then our left foot, we placed small objects carefully in each one, we lay on our backs on the floor and balanced them on our noses, we walked with them on our heads. They are absolutely limitless.

Wooden puzzles of everything under the sun. Enough said. Wooden puzzles hold up better than cardboard, and the pieces make a really satisfying clacking sound when you play with them. Plus we had ones with large, chunky knobs for handles on each piece.

Stacking blocks, preferably the old fashioned wooden kind. Same as abouve. They make a great noise; they’re very durable, and generally inexpensive. They can be stacked, counted, have numbers and colors on the sides. They can be named and counted. The possibilities are endless.

< My Thoughts > “They can be stacked…”

Whether it’s for a test to see if the child has met certain fine motor skill milestones, or for Psychological and Cognitive assessment tests, someone may ask your child to stack blocks.

The expectations are:

12-16 months = stack 2 blocks

16 -18 months = stack 3 blocks

18-24 months = stack 4 blocks

22-24 months = stack 6 blocks

23-26 months= place 3 blocks in a row and push like a train

28-31 months = stack 3 blocks trying to make something.

32-36 months = stack 9 blocks without them toppling over.

​Retrieved from: https://www.pinterest.com/adammila/pins/

6% This one’s tricky… a stuffed animal. Once you know which one your child prefers, you have to immediately run back to the store and buy up all they have… in case something happens to it. A stuffed animal is far less threatening than a person. You will literally be able to teach him how to play with others, take turns, have a conversation in line at the grocery store.

7% Bubble liquid and every known contraption for making bubbles. They’re awesome!

< My Thoughts > “Bubble liquid…”

The voice of experience cautions… When using bubble liquid be hyper-vigilant to make certain that liquid doesn’t find its way into eyes, mouths, etc. Plus the bubbles move fast and younger kids tend to chase them, falling or slipping on wet surfaces. Just saying!

9% We were in the car and once again she barked a one-word demand at me: “Music.” I had already been through a full day’s worth of headaches because at day care another child had a birthday celebration and Carrie is afraid of the Birthday song. Now she wanted the car stereo on. And I lost it. I held up my open hand where she could see it from he car seat and yelled, “You know how to speak! You will say five words to me or you will have nothing!” She was startled into silence for just a minute, then said, “I want music now please.” The whole concept for everything I’m telling you was born because I refused to let her do her own thing. This is my world, and the rest of my world doesn’t care if you’re autistic.

Specialists and educators wanted Carrie to try the little laminated pictures so she could just point to what she wanted. That just wasn’t enough for me, but more importantly, it wasn’t enough for Carrie. This all goes back to my earlier explanation that the world isn’t set up for your child to succeed just yet. If you adopt the attitude that your child can’t do any better than THIS, then that’s exactly what will happen.

12% If you want a cookie, you’re going to ask for it. If you want juice, ask for it. If you can’t reach your toy, ask for it. Teaching this concept took try-after-tantrum-throwing-try and its really tempting to make the screaming stop by just giving her what she wants. I’m sorry. I’m the mama and what I say goes. Don’t back down, this is too important. Note: I’m not speaking about those children who cannot speak. Picture cards or assistive technology are perfect for them.

< My Thoughts > “Don’t back down, this is too important.”

Along with tough love, there are a lot of tough choices for parents. My thought is begin with some form of communication… other than a tantrum… and work up from there. Eventually a child learns to ‘label’ things and you can combine the picture of ‘juice’ with the word ‘juice’ and over time, the child will make the connection. They will say the word before giving you the picture. At that point, you can probably phase out the picture. But, keep it handy, because what s/he was able to do today or this morning… may not be there tomorrow or this afternoon. It’s just the way autism works.

12% If your child is able to repeat lines from his favorite movie, start to notice if he’s using them appropriately. Is he screaming, “This is awesome!” when he goes inner-tubing for the first time? Then with effort we could get him to use different words to express excitement? You never know until you try.

As with all things involved in teaching anyone anything you can’t back down. If your child has to ask for juice to get it at home, but you order soda for him in a restaurant… then you have just told him that speaking really isn’t all that important.

29% Concept of Time… Of all the individual life skills I could have chosen to give an entire chapter to, you might be wondering why I chose this one. In Carrie’s case, her lack of understanding about time has led to more dramatic meltdowns than any other skill. It started from a very, very early age.

30% From very early on, you couldn’t offer Carrie ANYTHING unless you were holding it in your hand because she struggled with both object permanence and time. I’d love to tell you we figured out how to help her with this on a permanent basis, but it is still a struggle for her.

In fact, all I can safely say we’ve been able to accomplish is to help her tone down her reaction to the disappointment of something not happening right now. She still perseverates, meaning you have to tell her 53 times in a row, “Yes, we go to Disney World on Thursday.” Yup, on Thursday.: “Sure thing, kiddo, we go on Thursday.” “Today is Monday, then it’s Tuesday, then it’s Wednesday, then it’s Disney World Thursday.”

This was probably the single biggest use of the gloves in our household. I could hold up my bare, gloveless hand and tell her to say five words, because that’s a counting skill and she eventually mastered that. The gloves, though, had the days of the week, the months of the year, the words “morning” and “afternoon,” you name it. That’s why we owned so many gloves.

32% The visual glove gives your child something concrete to pertain to rather than the abstract concept of time. And nope, he’s not going to get it the first time. He won’t even get it the 40th or 500th time. Practice time techniques, eventually your child will absorb the concept. “We will go to McDonald’s in 25 minutes.” From there, we could talk about bigger things. It is March as I write this, and Carrie knows we’re going on a camping trip to Texas in July. It takes a lot of practice though.

Make sure you set up easy goals so your child won’t have to be patient for very long, then when he’s mastered that you can move the time further and further away.

< My Thoughts > “…set up easy goals.”

As a Special Education teacher and as a parent, building ‘success’ into the lesson or task is sooooo important. Pick a time when it will be easy for your child to comply. An example would be… in two minutes your favorite TV show will come on. Turn on the TV, set the timer and start the ‘count-down’. Having a timer App on your Smart Phone is handy when you are out in the community. Time the child’s favorite song… so that you can say, “When this song ends… you will be able to ‘get up’.” (Or whichever task you are teaching.).

39% Something that has become a concentrated effort on my part in the last two years is taking a keen notice of things that Carrie shows a particular interest or ability in. she is an incredible little artist, but only with the computer. She hates to use a pen or pencil because the little hand grasp is difficult for her. But she can create these really amazing drawings using the computer.

So I’m already looking into graphic design for her. The really important thing for me to remember is that this could all change. She might lose all interest in computers by next year. I have to remain flexible and resist the urge to decide… it may not work out that way. I will admit, it looks really good from here, but the future isn’t set.

In the best of all worlds, educational institutions provide students with Transition Planning concerning work and leisure time activities and training. The Division on Career Development & Transition (DCDT) of the Council for Exceptional Children provide a lot of information on this subject. http://community.cec.sped.org/dcdt/home. The DCDT department gives information on providing career preparation, providing planning opportunities, linking with community agencies, and conducting parent meetings to discuss this subject.

They suggest ‘direct observation’ and data collection. Or at least, parents can do as Lorca Damon suggests and observe their child for possible preferences, interests, and abilities. The article says, mot how the person interacts with other, completes tasks, and initiates new directions. Also, give examples of interests. Child attends and enjoys karate classes at the YMCA.

​Or, likes performing repetitive tasks in an organized work space. Think about noting possible situation or environmental barriers or difficulties which may be presented. For example, person does not like large, noisy spaces. Or, may never be able to learn to drive a car or independently take public transportation. Keep copies of any assessments and aptitude tests which have been made and know that there are many out to request for your child. Also, keep examples of any work you think may show special talents or creative interests and hobbies enjoyed.

46% As the mother of a child who has serious issues with elopement (determined wandering away), I may have to be a little more paranoid about this stuff than you do. Carrie was three the first time the police found her walking along the highway about half a mile from our house.

47% One of the best things you can do is take the time to go to the police station and the 911 dispatch office to let them know about your child. Ask them to keep your child’s information and photograph. Also to alert firemen or paramedics that an autistic child lives in the home.

That way, if there’s ever a fire, they know to look for a child who may or may not be able to respond to commands or give their location when the fireman asks, “Is there anyone in here?” Autistic kids might hide from the firemen during a fire, so the dispatcher can alert them ahead of time that there is an autistic family member.

< My Thoughts > “Autistic kids might hide from the firemen…”

What fireman looks like when suited up is very scary to most children. During the school year at elementary schools, fire personnel visit the schools and put on an assembly performance showing students how they suit-up. They also let the kids try on different things like the boots, the coat, and so forth. Great experience.

The fire personnel also need to know some things about special needs kiddos so I try to make arrangements to have a private session for my Special Education class. During that time I remind firefighters that trying to get into a dwelling where a special needs child lives may be a challenge. For instance, if the child is an ‘eloper’ then the doors and windows will be double-triple locked and secured. This may require special tools in order to access entry. Then once inside, the child will probably hide from you, or be non-verbal and not be able to tell you where they are.

Many children with autism also have epilepsy and sensory issues. Heat, sound and bright lights can trigger both seizures and panic attacks. Observe behaviors and know that the child may try to run, may spin, rock, run around and may seem to be in pain. Some laugh, hum, sing, remove clothing, or refuse to be touched. Often times, both children and adults with autism do not comprehend pain or danger. Speaking to them in clear one or two word, easy to process commands may work best in this situation. Make certain to pass any information on to those who may be transporting the person to another place.

47% Here’s how we protect Carrie as much as we can in situations where she cannot help herself:

When we go to a place like an amusement park or crowded event, we still use the accordion-rope bracelets that parents have for youngsters. She might look a little weird, but hey, the folks know us.

I have a laminated card similar to the car decal concept, but it’s on Carrie’s car seat. It has her name on it and alerts the paramedics that she has autism. Also they have about eight different phone numbers to call for help with Carrie.

We did alert the 911 office to Carries condition, mostly because she’s getting older and stonger. She may actually put up a huge fight.

We talk A LOT about what to do in an emergency. If your child is able, you can even teach him to dial 911 and lay the phone down. He does not have to interact to get help.

60% When Auburn University recommended I try the gluten-free, casein-free diet (GFCF) with my daughter, it was a hard sell. But my first research into the GFCF diet showed me a few eye-opening things. First, the only thing for sale was a paper copy of all the information that you could read for free. Second, they gave a very unexpected explanation of the logic behind the diet: we don’t have a clue as to why this diet helps. Many people with celiac disease who happened to also be autistic showed a marked improvement in the autistic behaviors when they went on the diet for celiac disease.

The thinking is that these patients are not able to process the proteins gluten and casein very well, and that the brain responds to those proteins by dumping chemicals from the brain that impair the patients. The very first thing this means to you is that it is not going to help every autistic person, only the ones who are not fully able to process those proteins. The second thing you should understand is that it will not hurt your child to give it a try.

62% Carrie has been on the GFCF diet since she was two. She is just as autistic as the day we first fund out. However, there are certain behaviors that were greatly improved, mostly things like her verbal skills and her ability to interact with us. Carrie cried for a day or two, when we began the diet. Her routine was interrupted and she probably felt a little weird. On the fifth day Carrie put all of the alphabet magnets in order.

< My Thoughts > “…we began the GFCF diet.”

According to Pennesi, et al. (2012), parents reported that they implemented the GFCF diet when their child has several physical symptoms. These were Gastro Intestinal symptoms such as diarrhea and constipation; food allergy symptoms, including red cheeks, red ears, rash or red ring around the mouth; hives, dark circles under eyes, sneezing, stuffed nose or itchy and watery red eyes.

Researchers found that these children had a ‘challenge’ with food proteins from gluten, casein, and soy, compared to non-symptomatic, non-autistic children. They found that after several months on a gluten-free and/or casein-free diet, parents often reported a decrease in hyperactive behavior. They also reported improvements in their child’s ability to focus, and decreases in sleep problems.

Yet another publication believed that some studies “may have led to an overestimation of this association” between the GFCF diet and unwanted behaviors. Others Patel & Dupont (2015) felt that children and adults with autism should have probiotics, prebiotics, and/or synbiotics added to their diet as an added ‘health benefit.’ This treatment is commonly known ‘Bacteriotherapy’ and is commented on under CAMs (Complementary & Alternative Medical Treatments); found on Home Page Navigation Menu as: #4C Look Into More Programs.

62% The diet did not suddenly make Carrie brilliant. It did not cause her to become a genius. What most likely happened was Carrie, at age three, had been hearing the alphabet all during the time our family worked with her sister and the diet helped ease the fog that was keeping her from caring.

67% Decide how long you are going to try this diet to see if it “works.” We set a completely arbitrary limit of one month. During the first month we saw some improvement, so we kept extending the time limit.

99% I don’t let myself think about tomorrow, or next year, or when I’m eighty-five. If I do, I’ll miss out on the amazing things that are happening today. Today my daughter told me she loves me. Today she tried to pick out her own clothes. Today she came home and told me something she did at school without me having to play Twenty Questions. It’s not huge, but for today, it’s enough.

(13% indicates location in the Kindle version of the book, instead of page numbers.)

Excerpts from this book...

13% When my son Norden was four years old he began to exhibit some concerning behaviors. I was worried. Even with all my experience I went through all the stages of uncertainty, denial, and worry that I had seen other mothers go through.

Norden’s situation wasn’t extreme, but it was concerning.

My entire professional life has been immersed in learning how to help kids, and how to help their parents. That’s what “behavior analysts” do. At the simplest level we analyze behavior and create a plan to create new behaviors. At the deepest level we become part of the family.

4% The most valuable thing I can share is my perspective. I’ve had a lifetime of experiences and witnessed the transformation of thousands of children.

I began my career working in the field as a behavior analyst. After the company I worked for filed for bankruptcy, I decided to start my own company, with my husband Samuel.

That was 1999. We started in our kitchen, just the two of us. After 20 years and helping over 20,000 families, we have autism centers worldwide.

My highest core value is unconditional love. I know that anybody reading this book will know that this book is written from the heart.

I understand children are so much more than the labels we put in front of them. I understand that children who are diagnosed with autism are far more than just “kids with autism.” They’re artists, athletes, and dancers. They’re friends. They’re multi-faceted just like the rest of us. I truly understand.

6% There is always a reason for hope. No matter what your situation now, it’s not as bad as you think. No matter where you are now in life, I can assure you one thing. You’re going to have some of the best days of your life, and some of the worst. The trick is knowing which is which.

Parents of children who’ve been diagnosed being somewhere on the autism spectrum only have a sample size of ‘one child’ to learn from.

< My Thoughts > “…only one child to learn from.”

In her book Doris explains that she opens group homes with a family setting model. The children are under the supervision of experienced practitioners who follow her program. Each child living in her home has an individual plan designed specifically for them. In order to know how to best address these severe behaviors, trained professionals develop systematic and descriptive behavioral assessments, functional analyses and intervention methods to help the child make positives changes in his or her behavior. This is a process which may take many months, even a year or more to accomplish. Autism is a lifelong diagnosis, but with successful intervention many children go on to become productive adults.

7% This isn’t some new age, psycho-babble, feel good strategy. This is science. Helping the parents first is part of the strategic plan to help the children. Think about it.

​Here’s how I look at it. ‘Dis-abled’ means some ability has been removed or negated. Most children who are referred to as ‘disabled’ aren’t ‘dis-abled’ at all. A child who is born blind doesn’t have the ability to see. He also doesn’t have the ability to fly like a bird or breathe under water like a fish. All he has are abilities.

My job is simple. It’s to help the child develop more abilities.Once you’re in a resourceful state then you can regain your ability to act effectively. You will no longer be disabled by your own emotions.

< My Thoughts > “You will no longer be disabled by your own emotions.”

Ben-Itzchak, E. et al. (2016) talk about the importance of understanding ones own emotions and the importance of developing ‘empathy’. They found that many people who have a low degree of self-awareness may have difficulty identifying ‘happiness’ and ‘fear’ emotions, as well as feeling ‘empathy’.

Zhou & Yi (2014) believe that parents and caretakers of a child with ASD, who report consistent negative emotions, enter into a vicious cycle. While those who are influenced by positive parenting and perform relaxation techniques find that their child is more relaxed, shows fewer symptoms, and makes greater progress.

8% Your life probably isn’t exactly the way you want it right now. There’s a gap between where you areand where you want to be.

The simplest, fastest way I can help you close that gap is by sharing with you the values that have worked for thousands of people I’ve worked with over the last twenty years. These are the values that have worked for parents even when they thought they already tried everything and their situation was hopeless.

9% If parents aren’t aware of the core values that will give them the best success with their child, any tactics and strategies they try probably won’t be effective long-term, if at all. And if they aren’t even aware of basic strategies and tactics, they will wind up frustrated, overwhelmed, exhausted and often angry.

Angry at their child, the world, society, God, and most of all, themselves.

That’s why when I help parents of children with autism I always begin with shaping their values. Why? Because values are the foundation from which to build long-term, lasting results.

The best way I found to share these concepts is through stories.

< My Thoughts > " I always begin with shaping their values.”

“Shaping behavior’ is a technique that came from behaviorism, a field of psychology established by B.F. Skinner based on the relationship of behaviors and their reinforcement of preferred items such as food or praise.” Retrieved from www.thoughtco.com/shaping-a-teaching-technique.

Bodfish (2004) tells us that there is ‘empirical’ support for interventions which include three pivotal parts – (1)teaching & reinforcing alternative behaviors (2) environmental arrangement or structuring (3) shaping or graded change.

‘Shaping behavior’ is different than managing ‘misbehavior’. Instead, ‘shaping behavior’ is structuring activities to reflect a desired outcome. Some use ‘social stories’ or ‘video modeling’. (www.DorisDuanYoung.com/AutismApps ).

“Social stories are simple stories (a created one-page, age-appropriate-reading-level story with pictures), that helps students learn about appropriate social behavior.” You may write your own stories or find them ready-made online. Retrieved from: http://www.teachhub.com/social-stories-autistic-students.

“Video modeling is a visual teaching method that occurs by watching a video of someone modeling a targeted behavior or skill and then imitating the behavior/skill watched.” Retrieved from: http://www.watchmelearn.com/video-modeling/what-is-video-modeling

10% All parents want their children accepted and thought of as any other children. They want their children to be respected. They want their children to feel happy and good about themselves. Some even consider the term “autistic child” insulting…

< My Thoughts > “They want their children to be respected. They want their children to feel happy and good about themselves.”

Sometimes those ‘living’ with autism feel that parents/society refuse to accept them the way they are. Instead of embracing their differences parents/society set about trying to make them ‘normal’. This is not always the case. Many parents just “…want their children to be respected. They want their children to feel happy and good about themselves.”

17% The stages of grief are used to describe what people go through when somebody close to them dies.Nobody died. Those children and families are still there, needing help. They didn’t disappear off the face of the earth.

< My Thoughts > “Nobody died. They didn’t disappear off the face of the earth.”

Many authors refer to Elisabeth Kubler-Ross’ “5-stages of grief” – denial & isolation, anger, depression, bargaining, and finally acceptance. Sicile-Kira (2014) explains that “Whether a young child who seems normal and later ‘slips’ away into autism. Or, the infant not meeting developmental milestones, the emotions that a parent goes through are ‘like’ these. But instead of reaching each stage chronologically, parents of children with autism experience them on a continual cycle… going through different stages at different times.”

“Parents never completely graduate out of these stages; just learn to spend more time in the ‘acceptance’ phase. Parents are experiencing the loss of their fantasy child, the one they had hoped and dreamed about.” “Parents can use the stages of grief to energize themselves to fight for the child’s right to a bright future.”

19% Autism is a label that’s used in the real world to help make it easier to identify and treat certain people who have identifiable behaviors that they might want to change, or improve upon. There are a wide range of behaviors that fall under the Autism Spectrum.

This is all necessary medical terminology that’s used in diagnosing patients. It’s necessary because insurance companies, medical providers, and public sector organizations need a way to systematize the way in which people receive help, and how that help is paid for. That’s part of the business of autism.

< My Thoughts > “ …medical terminology that’s used in diagnosing patients. That’s part of the business of autism.”

Your child’s most valuable records may be those which reflect his or her diagnosis as designated in the current Diagnostic & Statistical Manual of Mental Disorders, simply known as DSM-V. Edition ‘V’ no longer refers to Asperger’s as separate from Autism Spectrum Disorder (ASD), but is noted as a ‘degree’ of ASD.

It is very important that your child’s diagnosis reflects what s/he ‘looks’ like according to the DSM-V. With the ‘Asperger’ designation removed… many in the Asperger community feel that they have been negatively relegated to a ‘lower’ order of autism.

Bogdashina & Casanova (2016) relate that “the May 2013 fifth edition of the DSM-5 contained helpful changes in the diagnostic criteria of ASD, including the introduction of ‘sensory symptoms’, for example, hyper-reactivity or hypo-reactivity to sensory input. Hyper-reactivity is described as an unusual interest in sensory environment; excessive smelling or touching objects; and fascination with lights or spinning objects. Hypo-reactivity is the apparent indifference to pain/heat/cold; adverse response to specific sounds or textures.

Davide-Rivera (2015), herself diagnosed with Asperger’s, explains that adults with autism experiencing sensory disorders may display (under) hypo-responsive sensory seeking behaviors in some areas, while at the same time exhibiting (over) hyper-sensitivities in other sensory areas. Their environment needs to be adjusted in order to make them comfortable and less reactive.

21% We all live under the illusion that once we achieve our goals we can then, and only then, be happy.

Instead of hoping their son or daughter gets into Harvard, they’re now hoping he or she will just learn how to get through the day without throwing a tantrum in public.

What’s the cure for this? Two words – unconditional love.

< My Thoughts > “…unconditional love.”

Parent and author Kerry Cohen (2011) speaks of unconditional love… “If Ezra weren’t who he is, if I didn’t love him with that fierce animal love we feel for our children,” I might see a disabled child and think… how sad. “I want Ezra and Griffin to know that they don’t have to do anything to be loved. They don’t have to be anything other than who they are. That no matter what happens, no matter what they do or say or become, I will always love them…”

21% It’s impossible to love somebody and judge them at the same time. It’s impossible to love somebody and be impatient with them at the same time. It’s impossible to love somebody and be angry with them at the same time.

I learned this from ‘My Kids’. Kids who were dropped off at my group home like Janey, William, Leon and Debi.

Those four beautiful souls whose behaviors were so problematic that they couldn’t live in their own homes taught me, reminded me, that the solution to every problem isn’t solving the problem. It’s appreciating the journey, celebrating the progress, and experiencing being in a state of unconditional love every step of the way.

22% When I first met Janey in 2001 she was 8 years old and she averaged over 300 violent, aggressive acts a month. She had been adopted by her mother, Yolanda, when Janey was just 3 months old. Janey was thrown out of every pre-school she attended. The morning of January 10th I was on my way to the mall to get,now 20 years old Janey, an engagement present.

24% When Janey first arrived she was dressed in a sparkly, pink shirt and green Capri pants. Her hair was dark brown, and very curly. Janey’s mother Yolanda, stood in the doorway with Janey standing nervously beside her.

This was it. The day we had been waiting for. I greeted Yolanda, Janey, and her brother. This was going to be a new adventure for all of us.

One thing that struck me about Janey, after getting to know her and spending so much time with her, is how much she appreciated even what seemed like the smallest things in life. Yes, she would get frustrated and violent. We had strategies and the will to help her with that.

But what we could never teach was the pureness in her heart, the appreciation, the sense of wonder that Janey had about life.

Janey loved and enjoyed each moment. A butterfly might land on a nearby flower, and Janey would sit and stare with amazement and joy every time, even if it was the 100th butterfly she saw that week.

Sometimes when the other children would be upset, Janey would comfort them. Being totally present in the moment, appreciating her friends for who they were, not judging them for their inconvenient behavior.

Every night at dinner Janey would say thing like, “This is the best spaghetti I’ve ever tasted,” even if it was the 5th time we had spaghetti that month. Every bedtime story was the best she had ever heard.

Of course there were times when Janey did things that required us to intervene. Sometimes the interventions could appear harsh from an outsider’s view. One night in a restaurant we had to use a “mat wrap” to calm Janey down, and keep her from hurting herself, or others around her.

​A “mat wrap” is like a yoga mat. When a child is so out of control that nothing else can be done to calm the situation, the mat is wrapped around the child like a blanket. Then we just hold the child until he or she calms down.

< My Thoughts > “mat-wrap”

Most children with autism and sensory processing issues are calmed and comforted by the deep pressure of being wrapped. Children with sensory issues respond to weighted blankets filled with the same kind of poly-pellets used in Beanie Babies. The ‘mat-wrap’ seems to create the deep pressure which calms and comforts the over-stimulated child or adult.

In addition to the ‘mat-wrap’, there are several crisis management ‘escort and therapeutic holds’ which are safely used for both the child and the adult. These ‘holds’ may be needed to meet a person’s needs, move them to a safe location, or prevent them from hurting themselves or others.

Schools, group homes, and other care facilities are subject to rules and regulations regarding ‘mat-wrap’ use. Individual states have laws to protect citizens from ‘restraint and seclusion’.

​Medicare, www.Medicare.gov cautions the client/patient has the right to take part in developing their health care plan, including a ‘say’ as to whether chemical (medication) and/or physical restraints will be used or not.

Parents also have the right to state in a letter what the ‘institution/facility’ has permission to use as their child’s behavior intervention protocol. Parents – Be careful not to sign away those ‘rights’ in documents you may rush to sign, in order to place your child into a public or private school or facility. Just saying.​24% This is why doing things from a place of love, not frustration or anger, is so important. Janey knew that we were helping her calm down. She fought us tooth and nail at times. There’s no magic pill that’s going to take a child from 300+ violent acts per month to zero. It’s a gradual learning process.

Janey understood this. She never held a grudge. She could always sense that we were there to help her.

What she didn’t realize was how much she was helping us. Every day seeing the joy in Janey’s face when she made the smallest steps of progress was an inspiration.

Janey walked over to Aimee and put her small right hand on Aimee’s much larger back. Janey had no fear. Aimee continued to rock back and forth on her bed, and sob.

36% It’s okay, it’s okay, Janey repeated over and over as she gently rubbed Aimee’s back. Each kind word said by Janey seemed to deflate Aimee’s anger, like the air slowly leaking out of a balloon.

Compassion. Understanding. Empathy. Unconditional love. These are all things we’re taught that we must have when working with children with autism.

Greene (2016) asks us that “Out of all the qualities on the more positive side of human nature, which ones are the most important? Which ones do we most urgently need to model and try to make sure that our children acquire? Acts of compassion and empathy.” “Sometimes our adult energy, effort, and persistence in ensuring that our expectations are met make it harder for the child to meet that expectation.” Fatigue and frustration sometimes cause parents to forget that collaborative partnering with kids to solve their behavior-causing problems will achieve more success.

36% It’s easy to teach that we’re supposed to have these qualities, but it’s impossible to teach somebody to take on these qualities.

Unconditional love, understanding, and compassion are things that the children in our group home had for each other. They were a family. They had each other’s backs. They had an unspoken bond that transcended the tears, the outbursts, and their daily struggles.

It took months, but once Janey realized that she knew her left from her right, and that she could cross a street safely looking both ways, she was overjoyed. It was like she hit the lottery every time she accomplished something that to adults would seem small.

Sure, Janey could become upset easily. What amazed everybody about Janey, and about all the kids at our home, was how easily they could be happy. How easily they laughed and smiled. How easily they loved and cared for each other.

25% “If only you’d believe in miracles so would I…” That’s one of the biggest gifts the children have given me. It’s like they have a sixth sense, an appreciation for the miracles that are around us all the time. Some people spend their entire lives chasing their dreams and never once experience the pure joy for simple things in life that Janey did, and still does, on a daily basis.

I knew whatever I choose Janey would love it. She knew that the gift was just a token of what came from my heart. Life is so much easier when you see everything as a gift.

27% Debi was the complete opposite in personality to Janey. Where Janey was the whirlwind that made a grand entrance (and sometimes exit) to every scene, Debi was quiet and introverted. Debi didn’t say much. She was what some people may describe as a “high functioning” autistic child.

But she still had problems that she needed to overcome. Serious problems.

< My Thoughts > “Serious problems.”

Serious problems may occur when the child with ASD is transitioning from one activity, location to another, or across settings. The main goal is to defuse and deescalate these dangerous behaviors for the safety of the child and the caregiver.

Matson & Rivet (2007) discuss the seriously challenging behaviors which impede learning and compromise the child or adult living and learning in more independent settings; such as family or group homes and public schools. They describe the challenging behaviors as ‘self-injurious behavior’, ‘aggression & destruction’, as well as ‘seriously disruptive behaviors’.

27% There were times she’d become frustrated, even violent. Most of the time her outbursts would be directed towards inanimate objects, like her bedroom furniture. Debi was above average in size and strength. It didn’t take much effort for her to destroy a piece of furniture.

Debi’s frustrations often came from being frustrated about not being able to complete what most children her age would consider simple tasks – like spelling her name correctly.

Debi was a very gifted artist. For whatever neurological reason her gift for art didn’t translate easily into reading or writing. Her verbal and language skills were not at an effective level when she arrived at our group home.

Our mission, our passion, is to identify those areas where a child’s skills and results may need some help, and then do everything we can to help them learn how to do things most people would consider simple.

More importantly, we’d help them do things that would allow them to become independent and “functional” in the outside world.

Back in the day, when Sonny was in an institutional setting, he was an eloper and inflicted injury to anyone who stood in his way. I have since figured out that he was running to try to stop his frequent and scary seizures. But, the only way his caregivers could deal with taking him into the outside world was to harness him in a wheelchair. True story. He spent his school days in, and was transported in a wheelchair for ‘containment’.

27% For months Debi struggled with learning how to write her own name. Debi is not a complicated name. Debi’s last name is only a little more difficult than her first name. We would practice with her daily. And daily Debi struggled. It’s our job to keep her moving forward, reinforcing event the smallest steps of progress.

Even with this constant reinforcement Debi struggled. We would help Debi work through the struggles, whatever it takes to get results.

It was Debi’s 10th birthday. I had stopped by the store to get her a small gift and a card, when the director of our home called me. She said Debi had a present for me.

28% I was excited walking up to the door, but I had no idea what was about to happen, and how it would change my life. As soon as I opened the front door I heard Debi’s voice call out to me. “Miss Doris! Miss Doris! I did it! I did it!”

Debi practically jumped into my arms trying to show me the piece of paper. There it was, in big block letters. DEBI JEAN.

Debi had finally learned to write her own name. When I think back to that moment, and so many other like it, I get tears in my eyes. Happiness = Progress.

31% Life becomes a joy when you know that you’re going to celebrate something every day. The secret is making it easy to feel happy.

Sicile-Kira (2014) “Tip for parents: Celebrate and cherish each and every one of these moments. Tuck them away and pull them out on the days when you feel bleak and could use some hope. These are the moments that make you feel that life is good. Treasure them, and share them with those who have shared your sorrows so they can also share in your joy.”

31% If you set your life up to make it easy to celebrate and be happy no matter what’s going on in your external world, not only will you be less stressed and happier you’ll make everybody around you feel better. Especially your kids.

And when your kids feel better, they’ll make more progress. My belief is that the fastest way to be happy is to turn expectation into appreciation. And the best part? Everybody is happy and feeling better while your kids are making progress.

34% Being smart is learning how to effectively and efficiently produce results. As a behavior analyst I look for cause and effect relationships. It’s my job to discover, like a detective, the direct cause (antecedents) of disruptive behaviors.

Almost every local or state government in the United States has a family agency to intervene on behalf of children. Many people don’t realize that there are thousands of families with children whose behavior is so disruptive that the desperate family contacts the local government office for help.

< My Thoughts > “…every local or state government in the United States has a family agency to intervene on behalf of children.”

Find out the lead agency for your State at the ECTA Center: http://ectacenter.org/contact/ptccoord.asp

Historically, families bore children to share and enhance the workforce and to care for parents and grandparents as they aged. The first child welfare services program were created as part of the Social Security Act in 1935. Family preservation and support did not become Public Law until 1993. Family preservation and support did not become law until 1997. Shocking as it may seem.

States receive funds from the federal government to deliver human services that emphasize counseling, family preservation, family intervention, advocacy and education. The Office of the Attorney General in your state offers parents, grandparents, and guardians help with a variety of issues; as well as a list of community service agencies to contact.

34% What happens with many disruptive children and teenagers is that the case workers from these government agencies have no choice but to detain these children in what amounts to a jail. There is no choice because some of the children are so aggressive they are a risk to themselves and their own family members.

The problem is that these children will only get worse, no better if they are put into a detention center. That’s why the Florida Office of Children and Families asked me to open a group home for some of these children. They knew that I could help the children better than a government agency.

< My Thoughts > “…group home…”

​Only after we were able to bring Sonny home as a foster child, did he respond to toilet training. He was 13 years old.

35% Aimee had recently come to live in our group home. Unlike Debi and Janey, Aimee was not able to verbally communicate. Her language skills were not developed.

First the bed clothes were ripped off the bed. The sound Aimee let out was like something you’d imagine a wild animal would make. Next, the mattress came off the bed.

When Aimee became frustrated, or when she wanted something and didn’t know how to express herself, she would do the only thing she knew. She would become physically violent and destroy whatever was near her.

From a behavioral analyst’s point of view, every behavior has a function, or intent. One of the ‘mistakes’ parents make when children calm down after a tantrum is ask them “Why did you do that?” “Didn’t I tell you that you’re not supposed to do that.” “What’s wrong with you?”

< My Thoughts > “What’s wrong with you?”

From Mad in America.com, “What’s wrong with you?” by Michael Cornwall, PhD tells us that, “We are all capable of having any of the range of human emotional experiences, to any degree of intensity. They are formed by what happens to us and how our needs get met or not met.”

According to Greene (2016), “You shouldn’t be asking the “why” question very often.” “I learned a long time ago that the adult jumps to the conclusion that the child knows the motivation behind their behavior.” When seeking clarification ask instead, “So, help me understand what happen…” Or, “I noticed that you seem to have trouble with…” “What’s up?” Then the parent can ‘repeat’ what is heard in order to further clarify ‘why’ the child did what they did.

“Okay, so I think I understand now. Maybe we can figure out what to do so that won’t happen again. Do you have any ideas?” Greene cautions that parents shouldn’t do ‘all’ the problem solving, but let the child identify what’s happening and how to deal with the emotions or sensations they are experiencing; using whatever communication methods they need to accomplish this.

35% Many children with autism have never developed the ability to communicate effectively with words or language. They have learned to communicate physically, often with rage and anger.

Aimee began her tantrum that night in the living room in front of all the other children who lived in the home, including Janey. Unlike Aimee, Janey was highly verbal when she came to our home… in fact she swore like a sailor.

Jane watched intently as Aimee was lead from room to room. I’m sure Janey could relate. There were many times when Janey had to be physically constrained in what we call the ‘mat wrap’.

Aimee was older and much larger physically than Janey, but she was at a much lower level in her emotional and functional development. Janey treated Aimee like her little sister.

40% William was a very small, cute, typical looking 6-year old. By looking at him nobody would know he was autistic. Amber and Adam also had a 2-month old baby daughter. Their world was already being turned upside down every day by William.

He was a miniature version of his dad. Very slender, almost timid looking. Looks can be deceiving.

When William had trouble communicating he would become aggressive, even violent. When his baby sister was born William escalated both the intensity and frequency of his outburst. The target? His baby sister, Emily.

Leaving Emily unguarded for even a few seconds could result in William doing serious physical harm to his sister.

41% One of my monk friends says, “You can’t love somebody and judge them at the same time.”

He’s right. I watch my kids exemplify that every day.

The rest of the world is not like that. One of the biggest things parents of children with autism deal with is fear of judgment and ridicule by the outside world.

Many parents won’t even take their children to the supermarket, not because the kids act out, but because they fear the condemning stares of total strangers.

41% When I told Amber that it might take a year for William to learn new behaviors to replace what we call his “maladaptive” behaviors she began to cry again. She said, “He’s so small. He’s still my baby.”

“I’ve got this, Amber. He’s my baby now, too,” I told her.

42% Yes, the kids have autism. That’s part of who they are. When they make progress they don’t change from kids with autism to kids without autism. That’s not how it works.

Bodfish (2004) examines how “deeply” established treatments impact the range of symptoms that are expressed in autism within each domain area. He says, “Research has indicated that social skills appear to be pivotal responses that, when trained, can lead to improvements in other non-targeted symptoms of autism, such as verbal and nonverbal communication.” “While autism is undoubtedly a brain disorder, the neurobiological basis of autism remains to be identified.”

"Look for successful interventions for overt behavioral symptoms such as hand flapping, body rocking, object spinning, obsessionaly restricted interests and poor response to novel or new interests.” Finally, he cautions that interventions cannot be successful when operating in a vacuum. Parents shouldn’t be lead into the false dichotomy of “pills” without “skills”… never one without the other.

Their change is not superficial; it’s a three-dimensional expansion of who they are.

They become, daily, the best they can be. Like their relationships with each other, their transformation isn’t superficial, it’s deep and lasting.

Eight months after William was dropped off at our group home, Adam and Amber were back. They brought Emily, who was about to have her first birthday. This time they came to take William home. I feel so blessed to do what I do.

56% I thought back to all the children over the last 20 years that I’ve had the privilege to meet. During all those years of spending time with so many children and helping them accomplish so many things, I forgot to focus on all the gifts they had given me.

They’ve given me the gift of watching them be so happy and appreciate the ‘little’ things in life, to realize those ‘little’ things like marveling at the beauty of a butterfly were probably more important than the ‘big’ things I was focused on.

They’ve given me the gift of celebrating small victories and even small ‘defeats’ knowing that each moment is a new beginning no matter what’s led up to that moment.

Most of all they’ve given me the gift of unconditional love, and the desire to share all these gifts with you, and the hope that you will share these gifts with those who’ve been guided to cross your path. With the deepest love and respect, Doris Duan-Young.

58% In answer to some questions –

What do behavior analysts do? We are research oriented professionals who study the behavioral influences in the patient’s environment, then they work towards a solution; sometimes involving medication. Medication may involve improving current behavior in order to adopt an appropriate replacement behavior, depending on the patient’s condition.

57% Through applied behavior analysis (ABA), psychologists apply their experimental knowledge to people in order to objectively modify the actions of the individual. It is highly beneficial in numerous fields such as educational development and business management.

64% Autism Apps – One of the things we do as behavior analysts is to provide positive reinforcement for the children. The world of technology is expanding exponentially, giving us a tool with which to do this. Visit http://www.DorisDuanYoung.com/AutismApps for more!

90% Hypothetical behavioral intervention plan – to give you an idea of how the behavioral analyst begins working with your child. You would gather background information, including anecdotal incidences showing the behaviors targeted for deceleration. For example physical aggression to self and others. Elopement such as leaving a safe area and escaping into a dangerous area like a busy street. Verbal aggression like threatening harm to others. Tantrum behavior which can escalate to dangerous behaviors. Inappropriate sexual behavior such as taking one’s clothes off in public.

After the antecedents are identified then functional replacement behaviors are taught. When the child complies then identified reinforcers are offered. This is where the autism apps come in. Also, the child may like TV, DVDs, going somewhere special, listening to music, getting special attention from others, etc.

< My Thoughts > At this point an individualized program is created for the child and a staff and schedule is selected to implement that program. This includes follow-up evaluation, shaping and fading after the child has reached their goals. Not as easy as it sounds, but with consistency and unconditional love, it works.

​He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyss by Tenna Merchent, eBooks 2007 Edition; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (7% indicates location in the Kindle version of the book, instead of page numbers).

< Excerpts from – “An Important Message to the Reader” from author, Tenna Merchent… >

7% This book is an account of my own experiences in seeking treatment for my son’s physical ailments.

Traditional Western medicine has its value and place. I am simply sharing our experiences, what worked for us and what has not.

I strongly recommend that you consult conventional medical doctors before you make the decision to use these approaches so you will understand the risks of doing so.

< End of excerpts from – An Important Message to the Reader from author Tenna Merchant >

Excerpts from Tenna’s book…

7% What was it like to write this book? It was a calling, a mission, an assignment.

I kept thinking when Clay was sick, “I need to be writing this down. But I was too tired and too stressed.

I knew Clay was very sick – it wasn’t just back-to-back colds – but the pediatrician didn’t believe me.

8% Writing this book also made me grateful. Clay has been healthy for a long time now; I sometimes take it for granted.

Committing this story to paper vividly reminded me of how bad things really were, how miserable we all were, and how desperate I was to find answers. I always want to be grateful for this miraculous gift.

If you are reading this, you or someone you love probably has aluminum, yeast, parasites, or reverse polarity.

9% Now that I’ve written this story and some of my loved ones have read it, they really understand how hard things were.

It’s also frightening to write about something so unconventional. Many people accept stories of healing in the Bible; nevertheless, most do not believe it can happen today. Healing does take place today. God still works miracles. I know, because I’ve lived them.

I talk about God and Jesus in this book. If you are of another faith, please feel free to use the name of your divinity instead. The story of our illness and recovery is too important to be overlooked because of religious differences.

10% - 12% “He’s Not Autistic, But…”

For no reason, he bangs his head on window ledges, asphalt, the floor, and with his hands.

Those are just the things we know he’s allergic to. Eating is like walking through a minefield.

Luckily he’s not allergic to wheat, although people keep trying to get us to take him off of it because so many autistic children are allergic to wheat.

He’s two years old and can only say about eight things, mostly no, bu for ball (which he uses to describe almost everything), and du for dad. A two-year-old should have a 50-word vocabulary and be using two-word sentences. At nine months old he used to say mama or randomly string noises together to make words, but that skill is long gone.

He’s sick most of the time and a cold means at least two weeks of hell for the whole family.

His nose and chest are constantly congested and mucous shoots down to his chest when he sneezes.

He doesn’t sleep for more than two or three hours at a time, waking frequently and crying.

He’s unhappy most of the time, grunting and crying; smiling is rare.

He wants to be held all the time and refuses to walk even though he’s capable; Mommy’s back hurts most of the time as a result.

He insists on climbing up on the bar in the den every night, and paces back and forth, endlessly. It doesn’t actually make him 'happy' he’s just less unhappy. He grunts as he does it. Every night feels like a test of endurance.

He absolutely hates to ride in the car. A fifteen-minute drive puts Mommy in a full sweat, and an hour drive is almost out of the question.

We have to cut his hair when he sleeps because he becomes so hysterical and thrashes so much at the barber we’re afraid he’ll get hurt.

Noises frighten him so much we carry a headset intended for a gun range in our diaper bag. …A lawn mower backfiring during one of our walks can start a complete meltdown that will ruin the rest of the day for him.

The tags in his clothes bother him to the point we have to surgically remove them from every shirt to make sure no plastic thread or part of the tag is left to rub his skin. He won’t wear shirts with snaps... because something about the snaps bothers him.

His shoelaces have to be tied backwards, because he wants them exactly perpendicular to his leg. He becomes explosive if I forget and hurriedly tie them my normal way.

He has systemic yeast.

He makes eye contact, although I frequently find him looking through me instead of at me.

He likes to watch fans, although not as much as he did when he was a baby.

He sometimes crawls on the floor on his hands and knees and bizarrely drags his head as he moves across the floor.

“He’s not autistic, but…” I kept hearing myself say as I explained Clay’s behavior, illnesses, inability to sleep through the night, and sensory issues.

Ventola, et al. (2006) claim in their study that 195 children that have failed to be diagnosed with ‘autism’ have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. They go on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder. These children seem more adaptable than the ASD children, although they share the same behavioral differences.

12% His doctor said, “A child like Clay who is at risk for autism shouldn’t have vaccines.” I responded, “My husband is going to ask me why he’s at risk for autism….”

“Well, I wouldn’t label him like that, but he does share a biomedical spectrum of disorders with the autistic,” he responded.

It was too late; he had already told me my son was at risk for autism. I was scared stiff.

This was a new doctor for Clay, a specialist in lost causes: chronic fatigue, fibromyalgia, autism, cancer, and immune disorders.

He was the first M.D. to admit there was something wrong with Clay.

His new doctor said Clay was not producing growth hormone, and he wasn’t absorbing the nutrients from the food he ate. He put him on melatonin for sleep, a liquid multivitamin, … Probiotics, Nystatin and Diflucan for yeast.

In an article 2017 by Marci Wheeler; An Introduction to Possible Biomedical Causes and Treatments for Autism Spectrum Disorders, this contributor from Indiana University, Bloomington, identifies the following –

“While there is no universally accepted theory or causation, there is likely a complex relationship between genetic predisposition and an environmental trigger. This article highlights the biomedical theories of causation and is an attempt to provide basic information. It is not to be considered a recommendation or endorsement, simply an understanding of how some families pursue certain biomedical interventions.”

There are four broad areas of focus, intertwined and each affects the other…Gastrointestinal abnormalities, immune dysfunctions, detoxification irregularities and nutritional deficiencies or imbalances; where one of the areas may impact the other.

Bacteria, yeast or fungus overgrowth; may be treated with anti-fungal medication

“Leaky gut” defined as an increased permeability of the intestinal lining and may possibly affect the brain; may be treated with gluten & casein-free diets.

Alteration of intestinal flora as a result of earlier antibiotic use; may be treated with probiotics.

Immune dysfunction, thought to be genetically linked to environmentally acquired ailments; may be treated with an anti-viral medication.

12% Most autistic children have food allergies – typically milk, corn, soy, eggs, and wheat, the big five allergens. …gluten-free/casein-free diets are also popular for autistic children. But I had done my homework on allergies, and I knew Clay wasn’t allergic to wheat. I wasn’t about to restrict his diet any more than it already was.

12% At age two, Clay’s allergies became our focus of attention because he was severely allergic. His symptom would come on quickly and sometimes violently.

If he ate eggs, he would projectile vomit; if he got batter with eggs in it on his skin, he would break out in a rash.

Anything with cow’s milk in it would cause profuse and immediate mucous; he couldn’t even eat cheese.

Table salt coming in contact with his skin would cause hives, and chocolate would cause immediate head-banging and toe-walking.

Oats would cause his face to flush and his ears to get red. Feathers and dust caused sneezing and tons of mucous.

13% His body was telling me, “I’m miserable; I can’t take it anymore, make this pain go away.”

Every morning I would lay in bed with my hand on his chest, feeling and listening to his labored breathing and the gurgling mucous in his chest and nose and pray for a miracle.

14% Clay had systemic yeast, another typical problem for autistic children. But the test did show a healthy amount of acidophilus in his digestive tract, which the doctor was very surprised about. I had been giving Clay powdered acidophilus with at least one meal a day for about a year… (Acidophilus is also referred to as a probiotic.)

When yeast grows out of control because of a lack of beneficial bacteria, bad things happen. The yeast can spread from the digestive system to the rest of the body, causing a systemic yeast infection. The yeast becomes a parasite, rather than a balancing friend.

Yeast needs sugar to grow and survive; then it creates alcohol as a waste.

My brother-in-law describes it not so eloquently as, “Yeast eats sugar and poops alcohol.” That’s why it’s used in the production of beer and wine.

As a result, a person with a yeast overgrowth will crave refined carbohydrates, and then be tired after eating them because of the alcohol waste caused by the yeast organisms.

This too causes extreme mood swings because of the imbalances it causes in the bloodstream.

If you have a yeast overgrowth, you have aluminum. Aluminum kills bacteria. That’s why it’s used so widely as a preservative.

Aluminum was the underlying problem for both Clay and me. If you have a yeast overgrowth, you have to get rid of the aluminum first. Then you can go on a yeast-free diet to get the overgrowth under control.

15% We were later to find out his illness started with me. I was the carrier for his underlying problem, which turned out to be aluminum. I passed it on to him while he was in the womb and while I was breastfeeding.

We furthermore continued to contaminate him and me with aluminum in a number of the ways after he was born:

Getting a flu shot every year, which contains aluminum and other toxins.

Baby shots, or vaccines, which contain aluminum

Using toothpaste packaged in aluminum

Consuming table salt and baking soda, which are two of the number of ways aluminum gets into our bodies

The prescriptions for antihistamines, steroids, antibiotics and decongestants the pediatrician gave him made him even sicker, because most of them contain aluminum.

16% Releasing Clay’s aluminum was a huge change and improvement for him; then clearing the parasites brought him the rest of the way to good health.

32% … I sought out an herbalist who used energy testing to determine what was going on with the body. She indicated Clay had aluminum toxicity and yeast overgrowth.

She gave him homeopathic remedies for both; although I still saw no improvement in his condition.

Since “I was conflicted about this homeopath, I tested it (which I’ll explain in the next section), and got a yes. I continued to see her until I found a better practitioner.”

About this time I began energy testing everything I put in my mouth or my son’s. This is something I learned to do when I was in college, and played with from time to time although I didn’t take it very seriously.

I can’t overemphasize the importance of testing. There have been so many times when I had a nagging feeling something wasn’t right, other than all logic pointed to doing it anyway.

When my ego (the logical side) and my intuition are doing battle, testing is the perfect way for me to get to the bottom of the issue.

I have learned if it doesn’t feel right, it probably isn’t.

33% There are several ways to energy test using the muscles of your own body, or the muscles of someone else’s, both of which are called muscle testing, or kinesiology.

Testing gives me the confidence to reclaim my power.

51% When I found out about the links between autism, lack of speech, sleep disorders, yeast and allergies. I became almost obsessed with the subject. My son had all of these problems; did that mean he was in the autistic spectrum?

52% I didn’t want Clay to be diagnosed with autism, even if it was just Asperger’s.

I didn’t want him going through his whole life with that label, and the burden of being required to tell teachers, counselors, and anyone else who might care for him.

< My Thoughts > “I didn’t want him going through his whole life with that label…”

Special Needs Children: Should I Label My Kid? By Terri CettinaRetrieved from: http://www.parenting.com/article/special-needs-children on 6/26/17

For some, it's a godsend. For others, it's a stigmatizing professional opinion—and sometimes even a misdiagnosis. Read about kids who were labeled with a disorder, and what it meant, for better and for worse. “A label changed our life”Those in favor of labeling point out that the best treatment starts early: The quicker you pinpoint what's ailing your child, the faster you can get him extra support or even medication.

There's also a relief that comes with being able to “blame” a medical disorder.

When a diagnosis like ADHD is stamped on a folder, parents and professionals may stop looking for other solutions.

One child’s parents disagreed at first about the label and medication. His dad worried the label would be a license to coast—that he'd get used to special treatment. When he started taking Ritalin, his life changed.

Getting another opinion, a doctor recommended lead testing, as symptoms of lead poisoning can mimic ADHD. They discovered that the entire family (both parents, and both children) had contracted lead poisoning from their dinnerware. It hit the youngest the hardest.

Diet can affect kids' behavior; we had our son tested for food intolerances. Sure enough, food dyes and dairy popped up. And he lived on cheese and yogurt. Within five days of going dairy-free, “I kid you not; my son began looking in my eyes again.”

Although the diagnosis was crushing, one parent says it was also a huge help. “We came up with ways to make her life easier,” she says. “She's calmer now, as we know what she needs.” And the insurance company approved her therapy.

Many parents point to the lens that finally swayed them one way or the other: their child's self-esteem. “I understand when parents say they don't want to put a ‘ceiling’ on their child's potential by labeling them. But older kids tell me ‘I always knew I was different’.”

52% I was afraid it would influence their expectations of him and his behavior, and become a self-fulfilling prophecy.

At this point in time I had taken Clay to anyone I thought might be able to help.

Two pediatricians

Osteopath

Homeopath

Ear, nose, and throat specialist (ENT)

Allergist

Naturopath

Emotional healer

Herbalist

Speech therapist

Occupational therapist

Immune disorder specialist

The osteopath and herbalist were the only two who seemed to be helping. All the others said they could help, but we didn’t see any results.

With the strict allergy diet, and removal of incoming aluminum, Clay’s head-banging and toe-walking had almost stopped, but he still wasn’t speaking. He was cranky, sickly, and not sleeping well.

My mother had an appointment with a master herbalist in Northern Indiana, and I decided to go along.

53% He looked in my eyes with a magnifying glass and flashlight, and told me, “You don’t have allergies, you have aluminum. You’re allergic to everything.”

“What can I do about it?” He said, “It’s done, it’s gone.” And he was right. I didn’t know what he did, and at this point didn’t care.

I felt different immediately. I knew he had cured my allergies. …The change was miraculous.

I decided to drive up on a Sunday night with my husband and son in tow, to be there first thing on Monday when they take walk-ins.

…I was told it would probably be 1:30 before he could see us, but I knew it would bring Clay’s cure, so we waited.

…As we suspected, Clay still had aluminum, and he released it on the spot. I asked him if Clay would still be allergic, and he said no.< My Thoughts > “…Clay still had aluminum…”

Just to give you some idea of how aluminum might get into one’s system, here is an brief excerpt from Web.MD., online –

“Heavy metal poisoning is the accumulation of heavy metals, in toxic amounts, in the soft tissues of the body. Symptoms and physical findings associated with this vary according to the metal accumulated. Most heavy metals commonly associated with poisoning of humans are lead, mercury, arsenic and cadmium. This poisoning may occur as a result of industrial exposure, air or water pollution, foods, medicines, improperly coated food containers, or the ingestion of lead-based paints.”

Other significant metals are aluminum, gold, copper, silver, and zinc; as well as all heavy metals.

53% My heart just flew. I was so grateful. He also checked other things and worked on him in other ways.

When we left, I was walking on cloud nine. Clay slept well that night, and every night for the next ten nights. He was a new baby, and I was a new person.

< My Thoughts > “My heart just flew. I was so grateful.”

Tenna Merchant shares with me that she is now willing to reveal the name of this master herbalist; Solomon Wickey, of Indiana. Here is something I found written about him, although you can find much more out there, with a little looking. Smiles.

BERNE, Ind., Nov. 28— To the end of a dusty road, past miles of cornfields, they come. From California and Ohio and as far away as Central Europe, they bring their headaches, back pains and liver problems.

In the corner of a barn behind a curtain, Solomon Wickey tells them to sit in a straight-backed chair, then gazes into their eyes and suggests a herb.

Some gaze back into Mr. Wickey's solemn brown eyes and swear by his wisdom. In the barn that doubles as his office, letters thanking him for curing everything from colds to spastic conditions crowd a bulletin board.

The advice costs nothing. Mr. Wickey, an Amish farmer who is not a licensed doctor, charges only for the herbs, although many people leave donations.

53% My sister would call every day and ask, “How’s he doing? What did he eat? Is he having any symptoms?” I would excitedly tell her how wonderfully he was doing.

I felt like I had hit the lottery! He said "Mommy" for the first time about two months after our visit. I couldn’t believe my ears. It felt so good.

He quickly learned to speak, and within four months, Clay would say almost anything, and he was speaking in sentences.

My faith in God was renewed. I thanked Him every day for saving my son and me, and I continue to do so.

55% So, how did the master herbalist cure us? He simply released the aluminum.

There are so many things that can be cured just by releasing them. No herbs, no homeopathies, no exercises – just a prayer of release.

There are three steps in releasing:

Release

Reabsorb

Restore

59% We are not healers, just the ones asking for the healing. At best, we are the conduit for God’s healing energy. It is out of our hands whether it takes place or not.

End of excerpts from this book.

===============< My Thoughts > “Following the last excerpt (59%)…”

Following the last excerpt (59%), are the author’s chapters covering – Releasing, Imprinting Remedies, Release Codes, Parasites, Speech and Music Therapy, Why Did Clay Recover When Other Children Don’t, I’m Finally Fertile at Age 43, and The Happy Ending. This book includes a full appendix of sources and resources; names and titles of important people and books.

Reading this book may cause a paradigm shift for many people. Expanding our minds and exploring all avenues leading to or away from autism, at least by reading about them in perhaps a new way.=========REFERENCES used in < My Thoughts > are:

​​I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker, eBook 2011 Edition; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers).Excerpts from Jeni’s book, with < My Thoughts > by Sara Luker -1% “Stars!” “Stars?” “Stars, yes.” When Jaxson smiles, he lights up a room. Other times, he resembles the devil incarnate.“Stars?” It went back and forth like that for two minutes. He wanted something from me and if I couldn’t figure out what he wanted, in the next twenty seconds or so, shit would be hitting the fan – or the walls. Biting hitting, screaming, kicking – any or all of the above were imminent.He was doing his part – he was asking. I just wasn’t equal to the task. I had no idea what stars meant in his strange little world.“Stars!” I could see the urgency bubbling up within him. He tilted his head, thinking a minute, the synapses firing in his special brain. “DS?” he inquired.“DS? You want your Nintendo DS?” He wanted his game! “DS, please.” What stars had to do with DS I had no idea. But you have to love an autistic kid who can still use the word please.

​< My Thoughts > “Nintendo DS…” (Star Coins)On the Nintendo website, www.nintendo.com, they tell us that ‘star coins’ can be earned at all levels of the Nintendo DS game. Could it have been ‘star coins’ that Jaxson connected with as a way to communicate that he wanted to play his Nintendo DS?And, what was the game’s attraction for Jaxson? Probably, as for many players, the chance to interact with the world through action games without leaving the comfort of his room. For the autistic child, if it improved eye-hand coordination… and possibly even gave him some better spatial orientation, this could have been a very good thing for him to do. And, even a motivating reward to be used for behavior modification. Yeah! 1% I grabbed his face, covering it with kisses as he pulled away. He was happy I finally understood him, but not as pleased with the sudden facial attention. That’s another issue, being touched. He doesn’t like it much. I do it anyway.… I’d earned the right, after nine months of morning sickness and an all-night labor session; you should be able to kiss a kid as much as you want.< My Thoughts > “That’s another issue, being touched. He doesn’t like it much.” Sicile-Kira (2014) tells us that a typical characteristic of children with autism is “to become stiff when held, does not like to be touched.” She also tells us that when interviewing Temple Grandin, “From as far back as I can remember, I always hated to be hugged, but it was just too overwhelming…

​Being touched triggered flight, it flipped my circuit breaker. I was overloaded and would have to escape, often by jerking away suddenly (from Temple Grandin, Thinking in Pictures).” Another excerpt from Sicile-Kira tells us that “Some babies become stiff when you pick them up… usually this indicates that their tactile sense is out of whack.”

Jaxson is my second son. Jake is my first son, who also has autism. Jake also can’t tell a lie. Whenever he does something bad, he tells me about it immediately. For this reason, I think all people should have a touch of autism. Truth in advertising – you know what you’re getting.

< My Thoughts > “…Jake also can’t tell a lie.”

Meyer, et al. (2016) tell is the “much of a child’s social life is built around imagination, trickery, deceit, and the dynamics of telling and keeping secrets.” Children with autism have this missing piece because they prefer the role of one who is predictable and compulsively truthful. “They are frank in their descriptions of people and events; brutally so.”

3% “Jake! Bring me the DS!” I screamed. It’s a perfect snapshot of my life. Bob and weave, baby. Bob and weave.

I straddle Jaxson, holding his wrists down, hoping he’ll calm down enough so that I can get off him. I need an Ibuprofen. He’s in the middle of one of his tantrums and he’s all over the place – one moment kicking me in the stomach, the next moment patting me on the head.

3% Then I take a head-butt to the nose and its lights out for a few seconds. Tiny white specs flood my field of vision and I crumple to the floor with son still clinging to me. I start sobbing and don’t stop for a good half hour. I’ve disappeared into myself like a snail pulling back into its protective shell. So that’s what post-traumatic stress looks like.

< My Thoughts > “…one moment kicking me in the stomach, the next moment patting me on the head.”

Sonny is on medication designed to ease sudden extreme and hysterical emotional outbursts of laughter or crying with accompanying head-butting and kicking. According to the prescribing physician, children with autism often cry or act angry when they really are not. Who knew?

The reverse is also true… they may laugh when they are sad or upset. These sudden, involuntary ‘heebie jeebies’ are very scary for parents and child. Fortunately we’ve found a med for that. Smiles.

3% This is me, Jeni: I’m a five-foot nuthin’, one hundred and …ahem pounds – a roly-poly, forty something, Rubenesque bon-bon of a gal often described as cute but never sexy.

I have two autistic children, an Australian shepherd named Sugar, and an albino frog named Humbert-Humbert. I’ve also got a husband, but he is sort of a bit player in the melodrama that is my life. The frog gets more screen time than he does…

6% I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.

“Mom, who is more irritating, me or Jaxson?” I stood over a broken Christmas bulb on the kitchen floor.

“You both have your moments,” I told Jake. “What do I do that’s as bad as his fits?”

“You ask a lot of questions. Questions, questions, questions. Questions are good, but sometimes when they’re coming as fast and furious as you ask them…it feels like getting hit with one of your brother’s little fists. Or a stun gun.”

“I guess I’m just bi-curious,” said Jake. I smiled. “Where did you hear that word?” “On TV somewhere,” Jake said as he picked up a few shards of red glass.

< My Thoughts > “Questions, questions, questions.”

I’m going out on a limb here, but having been around verbal students with autism, my ‘educated’ guess about the constant question asking is as follows –

The possible constant need for questions to be answered can be a bid for adult attention, coupled with a bit of underlying Obsessive Compulsive Behavior (OCD). Autistics showing signs of OCD, like thoughts that won’t go away, saying repetitive words or sing-songy words, or continually checking on something become their daily mantra or ritual. Perhaps there is comfort in communicating and connect with the adults in their world, by asking never-ending questions.

To add to this thought, Ruzanno, et al. (2015) state that there are recent efforts to “unraveling the nature of relationship between autism and associated disorders.” “Our aim is to explore and understand psychological disorders as well as to identify which repetitive behaviors interact in autism and compare this to OCD.”

6% At last, I was finally able to sit in the rocking chair with Jaxson and make nice. Usually, when he realized he isn’t going to get his way, there is a hurricane of dysfunctional behavior followed by a self-imposed time out, then him hugging me and crying, eventually leading to, “Better, Ruby?” “Yes Max, all better,”

He calls me Ruby and I call him Max, something that started when I began mimicking the voice of the cartoon character on Max and Ruby, one of his favorite shows.

“Good job, Ruby.” Jaxson smiled and used his little fingers to push the downturned corners of my mouth up into a smile.

Autistic people often have a problem matching a facial expression with a corresponding emotion. Jake regularly had to consult the Chart of Expressions on his special needs classroom wall in order to know what someone he was talking to might be feeling inside.

Grossman & Tager-Flusberg (2012), tell us that there is some correlation between the “degree of social impairment, and the ability to determine what dynamic facial expressions mean.” Their pilot study showed that participants found it most difficult to differentiate between “the properties of surprise and those of a happy expression.” Participants learned that teen with their mouths in an open position were in a state of high intensity of anger, sadness, and surprise. While teens with closed mouths were experiencing an emotion of lesser intensity.

7% My husband was having “issues” coming to terms with his children’s autism; especially at Christmastime. “Well, I’d take them out, but they don’t like doing anything.”

My response wasn’t exactly full of Christmas cheer. “Correction,” I said “they don’t like doing anything you like.” Jaxson loves playing on the swings. Jake wants to make things in the shed. You will never turn them into the little men you dreamed they’d be, so how about realizing they’re perfect little men just as they are?

< My Thoughts > “how about realizing they’re perfect little men just as they are?”

Yanofsky (2012) says that he doesn’t like to teach his son things that come naturally to other children. That he knows he could be a better husband and father, but life is difficult with his 11 year-old son, and his tantrums drive him crazy.

7% Do you think I like spending hours of my life doing these repetitive, painfully boring things? No. But I do them because they like it. I do it for them, not for me. Some days I wonder just how harshly I’d be judged if I disappeared suddenly, changed my name, and never returned.

Christmas Eve went fairly smoothly after that. Mom and Bob arrived for dinner, presents were revealed, the questions stopped, and there were no more tantrums.

< My Thoughts > “Christmas Eve went fairly smoothly after that. … the questions stopped, and there were no more tantrums.”

My curiosity is always up when my child, with the reputation of Attila the Hun, acts like the peaceful little angel when around strangers or people he only sees rarely. He may even sit quietly in a chair. Knowing this, I wanted say to Jeni’s mom …“honestly, her life is a nightmare of questions and tantrums, all day every day!”

And then there is how this behavior works against you when you try to convince the doctor that your child needs something to take the ‘edge’ off. My son’s doctor actually said to me, as Sonny sat peacefully – “It doesn’t seem that he needs anything, but I would be glad to prescribe something for you, Mom.” Ugh! Give me strength!

11% In elementary school, the counselors tried to solve Jake’s sensory overload by giving him a huge set of noise-reducing headphones. Yeah, that was nice. Now he not only didn’t fit in, but he had a monstrous set of yellow earphones to even further separate him from his peers. He looked like a big, sweaty bumblebee.

​Eventually they were replaced with orange ear plugs that he now wears in the gym, in the noisy hallways, and often in class. Add a mini bottle of antibacterial gel to his arsenal of protection, and all he needs is a pocket protector and a lisp and he’s right out of central casting for Nerds III. “I am the Walrus, goo goo ga joob.”

< My Thoughts > “…huge set of noise-reducing headphones.”

Gee, et al. (2013) believe that when sensory processing is impaired it impacts a person’s daily routine. That when the environment is acoustically modified with music, delivered using specialized headphones and a CD player, it can help children with autism cope. Auditory hypersensitivity and abnormal responses to sounds that are neither threatening nor uncomfortable for most can cause behavioral disturbances in people with ASD.

While the study states that headphones playing music may not work for all those trying to cope with sensory processing issues, it seems to work for many. As a parent and educator, I am continually aware of filtering interventions through the process of what is ‘age appropriate’. And, I know that getting someone to accept an ‘earbud’ placed in their ear would require a careful learning-acceptance process, over time. But, everywhere you look today, you will see students and adults with that white cord dangling from their ear as they listen to their tunes. Smiles.

12% With Jaxson, it’s different. He’s blissfully unaware of even the concept of social ineptitude. He’s on a stage of his own and we’re all bit players, coming in now and again to offer clothing or food. At nine, he’s just beginning to speak in complete sentences and still wears a diaper.

< My Thoughts > “…social ineptitude.”

Bellini, et al. (2009) describe Social Skills Training (SST) as ranking the 9th most effective strategy to be taught to people with ASD. It comes well behind “behavioral, language, academic and psychopharmacological interventions.” One of the reasons they state for a not to provide SST is that it is seldom taught across multiple settings. Another objection is that it takes students out of academic time for the 9-week period scheduled. This study does approve of the encouraged ‘self-monitoring’, ‘relaxation techniques’, and ‘emotional regulation’. But again, they mention the pitfalls of the length of the program resulting in a ‘plateau’ effect, although they admit that they’ve seen no ‘dramatic failures’ of this intervention.

12% His inability to communicate with others in a meaningful way makes forming relationships difficult. He’s unaffected by social mores or his lack of appropriate actions because they do not exist within the production in which he is starring. They don’t exist for him yet…

< My Thoughts > “…inability to communicate with others…socially.”

Casenhiser, et al. (2015) talk about a Social-Interaction-Based Therapy. This therapy, when successful, increases a child’s functional and appropriate communication. Increasingly it provides the amount of language input/intake and enables the participant to broaden learning opportunities in a group and/or peer setting. Students not only learn the ‘functionality’ of language but they gain the ability to ‘self-regulate’.

In my experience, I have seen the results of their programs. Students learn to interact more comfortably… such as asking… “How is your day going?” … “Do you have homework tonight?”… “Would you like to play a boardgame with me?” “They also learn which questions are appropriate and which are not. For instance, not saying to someone…”Didn’t you wear that same dress yesterday?” is not thoughtful question and may NOT result in ‘happy face’ emotion.

12% Last night before bed, Jake asked me this: “Mom, in Heaven will I be normal?” Ugh, how do I answer this? And what is the truth? Mommy’s truth isn’t something he’s apt to enjoy…

But bedtime is definitely not the time for pessimism. So what do I answer? “Honey, heaven is whatever each person wants it to be.” “Really?” he asks, rubbing his tired eyes. “Yep, I’m pretty sure.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.” Click. Lights out.

13% From the moment he was born, Jake was never a good sleeper and I had to lie in the bed, my bed (yes, he still sleeps with me, what about it?), and wait for him to fall asleep before disengaging whatever body part of mine was underneath him, and perform a series of stealth movements until I extricated myself from the room to sweet, sweet freedom.

< My Thoughts > “…never a good sleeper.”

The literature suggests many things may be happening here. Sonny’s neurologist suggested adding melatonin to aid sleep and also said that our guy may be having epilepsy interruptions. We found that one of the new medications we had him on had sleeplessness listed as a possible side-effect. Some parents have found success with ‘weighted blankets.’

Of course, every behaviorist will insist you try a consistent ‘bedtime routine’. Yes, we have that too, turn on music box with floaty things, turn the lights out twice, cover with Toy Story blanket… and so it goes. Sometimes it works and sometimes Sonny is determined to pull an all-nighter! Smiles.

13% Now he has questions. Every night, before he can even try to close his eyes, he asks the same five questions. Here are my responses:

“There are no legendary creatures. The door is double locked. There is a heaven and you’re going there someday. Yes, I’m sure. Yes, I’ll leave the light on in both bathrooms.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.”

22% It was a dark and stormy day. A bad day. No, a really bad day. I wish I were engulfed in flames. HailMary, full of grace, is there a flamethrower in the vicinity? And then I heard it, amid the cacophony of screams inside my head and out. “Is there anything I can do… to help?”

< My Thoughts > “I wish I were engulfed in flames.”

I can understand this cry for help because if one were truly on fire someone would rush to help…every time. But, when you’re dealing with two children with autism, help rarely comes without a lot of begging.

22% That day, I met an angel at the Rite Aid drugstore … my child was in the middle of a full-on hysteria-inducing temper tantrum because I would not purchase him another camera to replace the one he’d put into the toilet and flushed the night before. The toilet was unscathed – the camera, however, hadn’t been so lucky.

I’d stopped at the drugstore to pick up a new prescription for Jaxson, the third in a series of medications to try and help prevent his aggressive behavior, particularly at school.

23% When I am in the store and my child suddenly rolls into tantrum mode, kicking and screaming and such, it’s not very helpful if a passerby says things like, “He needs is a good spanking,” or “You wouldn’t see my kid acting like that.” I want to say, “Go ahead and hit him, see if it works.” Or, “Bye, honey. This nice man is gonna take you home. Have fun…”

Okay, so I don’t actually do this. But I really, really want to.

< My Thoughts > ‘The invisibility of autism…’

Hoogsteen & Woodgate (2013) find a study that talks about “…improving the quality of life of families of children with autism living in rural areas.” This study reaches parents who ‘live the experience’ and talks about “…their thoughts, their feelings, their challenges, their opportunities, and their needs.”

They say that “…autism was invisible to the untrained eye yet visible in ways that people deemed as undesirable.” “They have no clue because “C” looks perfectly normal. He walks. The talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.”

When we lived in a rural area, the community knew who Sonny was and they were very accepting. I was teaching at the only school, so that helped. Still, people were startled when Sonny would grab things out of their shopping cart, or when he would just wheel the whole cart away.

By that time Sonny’s behavior was helped by various meds. Before we found the right epilepsy meds, however, he did have several scary, very scary episodes, culminating in equally scary frantic rides over the narrow mountain pass to the city hospital. Thanks to the volunteer Fire Department, we never had to call ‘Flight for Life’.

24% But, this particular day, as I proceeded to make my way out of Rite Aid…Jaxson pummeled me from behind, sinking his teeth into my arm. My purchases fell from the plastic bag, trailing behind me like Hansel and Gretel’s breadcrumbs.

Then, the angel appeared. Without asking, without my silent pleading eyes meeting hers, she quietly followed me to the parking lot, picking up my prescriptions, hair spray, box of tampons and a bag of Hershey’s kisses, gathering them all up as I maneuvered to press Jaxson against the car with my body, fishing for my keys.

It took ten minutes to unlock the door and push my screaming child inside. I closed the door and stood there for a moment, taking a look at the nice bruise on my arm that was already forming, his little teeth imprints clearly in the center. She handed me the bag and smiled as Jaxson wailed inside the banging on the window, his voice only slightly muffled by the closed windows.

“He’s autistic,” was the only thing I could think of saying. “Yeah, I kind of guessed there was something going on there besides the regular old tantrum. Can you get home okay?” she asked. My eyes filled with tears. “Yes, thanks. You have no idea how nice it is to have someone not judging me right now.” “I think I can guess,” she smiled and then left for her car. That day, I met an angel at the Rite Aid drugstore.

< My Thoughts > “…You have no idea how nice it is to have someone not judging me right now.”

Again, the parents in Hoogsteen & Woodgate (2013) felt that their community members were unaware and uneducated about the challenges they faced when bringing their child with them when they shopped or visited in the community. Such as when the negative characteristics of autism were displayed,– tantrums, yelling, disruptive behavior, meltdowns, screaming, physical violence towards themselves and others.”

“Most people look at you and they just think he’s a bad kid… because he looks normal.” “What they think they see is bad parenting, a bad uncontrollable child, or just a rude disruption to their shopping experience.

Parents shared how difficult it is to feel that they are on their own… that most people are so judgmental and frustrating. One parent says “You get home, and you’re just destroyed because it replays in your mind. How do I make them understand?”

35% Like Martin Luther King – I had a dream, and it didn’t include raising two autistic kids on my own in a loveless marriage. But since I’d been pretty much doing that since they were born anyway, what was I holding on to? The scent of normalcy? No, I think not. A whiff of desperation was more like it.

37% The whole autism thing snuck up on me like the swine flu – the symptoms fairly banal until it felt like I was hooked up to life support and a priest was administering last rites… after that, nothing else mattered. Will and I were raising a family, too busy making it from day to day unscathed to worry about such trifles as being in love. I came to the conclusion that there is no shame in playing the hand you are dealt. Don’t cry for me, Argentina. That’ll just piss me off.

< My Thoughts > “…playing the hand you are dealt.”

Acceptance and commitment are key to playing the hand you are dealt. Recently, programs have become available to help parents learn the skills to help them become proactive and take the action needed to feel empowered to deal with autism.

For example, there is a website – www.actmindfully.com.au which seemed to start by giving the following messages:

“Teaching psychological skills to handle painful thoughts and feelings effectively, in such a way that they have much less impact and influence – these are known a mindfulness skills.”

“Helping to clarify what’s truly important and meaningful – that is to clarify our values… and use that knowledge to guide, inspire and motivate to set goals and to take action that enriches our lives.” Retrieved on 3/21/2017.

37% Jaxson is a little genius. I have no proof of this, but I think it might be true. He’s a little guy for eight, and he pack a mean wallop when he wants to, but he is learning that tantrums won’t get him what he wants. I’ve hauled him out of enough stores kicking and screaming…for him to know that. He’s finally getting it.

< My Thoughts > “…tantrums don’t get him what he wants”

Tantrums in our house means lashing out at whatever is in reach with… hair pulling, biting, scratching, head butting, slapping the TV screen, kicking and throwing things. Just saying!

Reducing or extinguishing tantrums is easier said than done. Not every mom can accomplish this on her own the way Jeni did. Santiago, et al. (2016) describe just how difficult it is to prevent episodes of severe problem behavior. A study they liked talked about the most successful changes are those delivered in the very setting that is triggering or causing the outburst. The authors say that most outbursts come from denying the child a ‘desired tangible, an escape, or the negative attention’ they seem to need.

The study showed that a ‘tolerance for being denied’ can be learned. To establish this, ‘tolerance’ participants learned more appropriate responses, such as: “Excuse me” “Can I have that, please?” “May I have my way, please?” Throughout this intervention these phrases were “taught to tolerate denials and delays to requested reinforcers.” For children who were non-verbal or had limited language, they were given the phrases on their communication devices.

The article goes on to say that shaping the behavior of participants was done over increasing periods of time, and eventually in natural settings. Children were also cued and coached to take a deep breath and respond with ‘okay’ when they felt calm enough to continue the therapy. Eventually, simple compliance by allowing them “to have their attention diverted to work, play, or conversation.” For example, Zeke a boy with very challenging self-injurious behavior, learned to accept the response… “Not right now Zeke.”

37% He likes to have three televisions in the house on at all times, each with volumes raised to an ear-splitting decibel level. He doesn’t like being clothed. Every day he gets off the school van, hops inside, and takes of everything he is wearing, except his undies. Rain or shine, summer or winter – Jaxson doesn’t like being dressed.

< My Thoughts > (Jaxson) He likes to have three televisions in the house on at all times

We too, are a ‘three television on at all times’ family. One with Blue’s Clues DVD’s, one with Toy Story DVD’s, and Elmo DVD’s on the third one, (sometimes switched with Thomas the Train or Reese Witherspoon or Meg Ryan comedies).

37% He attends a regular elementary school and even participates in a general education first grade classroom when he is not in his learning disabled class with his other special compadres.

Jaxson can make his own popcorn in the microwave, toast his own waffles, cook his own chicken nuggets, and apply a liberal amount of catsup to the plate for dipping. He also has an affinity for baths, of which he takes at least two baths a day; filming his watery antics for posterity. Filmmaking is his newest obsession and no less than fourteen digital video cameras have paid for it with their lives … filming down the toilet or under the running tap. He doesn’t understand that what he films is not interesting or particularly appropriate.

< My Thoughts > “…Filmmaking is his newest obsession.”

“Obsessions and special interests can range from the quirky to the marvelous, but obsessions can genuinely interfere with the quality of life. Knowing which is which and what to do about it can be one of the balancing acts of parenting a child on the spectrum.” “Linking old interests to new ones can sometimes be the beginning of opening up your son’s or daughter’s horizons – not to stop them from enjoying the interests of their choice, but to show them how many choices they might really have.” Retrieved from www.ambitiousaboutabutsm.org.uk on 3/23/17.

From the Autism Files: Obsessions and special interests… ‘a water obsession’. Our Michael’s obsessions with toilets we assumed came naturally, because dad is a plumber. But it was more… “wherever we went Michael would go straight to the toilet to see what it looked like. He wouldn’t use it, he just wanted to have a good look at the workings… to investigate.”

He had that obsession for an entire year… everyday investigating toilets and turning on the taps.” When we were somewhere and atoilet wasn’t available, he would tantrum. Finally, we made him a book full of pictures of toilets to take everywhere with him. We called it Michael’s Toilet Book. Retrieved from https.//gabriellebryden.wordpress.com/2009/11/08/obsessions-special-interests-the-autism-files/ on 3/23/17.

39% His speech was improving. He began to pick up little phrases here and there and often parroted them back at appropriate times, telling me his brain was starting to make some meaningful connections.

< My Thoughts > “…his brain was starting to make some meaningful connections.”

“What we see or hear, shape our brain connections during certain windows of development.” It is not clear how autism arises or how the brain is different. It is known that the brain is an intricate web of connections regulated by the quality and quantity of synapses, or points of contact between nerve cells and the building blocks of brain circuits.

“Autism may involve ‘a disconnect’ between the brain and its external environment – an inability of the brain to change properly based on input from the outside world.” Or, “the neurons are degenerating or dying in large numbers or that they’re not communicating properly.” Retrieved from Childrenshospital.org; Boston, MA. On 3/24/17.

40% Somewhere he picked up the little nugget, “Boo-ya!” Okay, so “Boo-ya” works if, say, he’s managed to putt the plastic ball into the mouth of his alligator golf game. But “Boo-ya” is decidedly less amusing when he says it after kicking me in the shin.

42% At the beginning of the new school year, as we passed through the computer room for orientation, Jake had approached the computer teacher, looked straight at his and asked – “Hey, how do you make your moustache do that?”

Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair. To his credit, the teacher spent a few minutes explaining the ins and outs of moustache wax.

< My Thoughts > “Hey, how do you make your moustache do that? Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair."

This reminds me of a foster child we had who was much like Jake. While standing in line to check out at Walmart, he saw a man in a muscle shirt with full body tattoos including full sleeves. Our boy crept up close to the man and exclaimed into his face… “Do those pictures wash off?” The man just scowled at him and grunted.

Another time, there was a lovely lady dressed in beautiful sari and with a diamond protruding out from the side of her nose. Our boy twisted to an angle that allowed him to look up her nose… “How do you keep that in there?” he queried. Looking at me, shrugging her shoulders, she wisely acted as if she didn’t understand what he was saying.

Then there was the time that Sonny threw a tantrum on an escalator… sending people scrambling in every direction. Smiles.

42% The gym teacher had also made an impression, shooting baskets with Jake when he noticed him feeling isolated and insecure within his peer group. “You’re pretty good at this, Jake,” coach had told him after spending fifteen minutes shooting hoops with him, one on one.

His teacher told me Jake beamed with delight and felt special for the rest of the day. This is something new for him – these adult male advocates taking time around others to encourage something he’s interested in. My life definitely fits into the “it takes a village to raise a child” category.

56% I hope my kids look back on their childhood and smile, just like I do when I think of my own childhood. I hope the bad mixes with the good becoming a wonderful stew of memories – I hope I teach them to make the right choices and when they don’t, the consequences aren’t too severe…hope, and hope, and hope.

Lyons & Fitzgerald (2003) found that “Recently a number of individuals with autism possess a very early (1 year of age) autobiographical memory.” Previously, it was thought that because of generally an impaired recall for personally experienced events, individuals with autism had no very early childhood memories. Now professionals “speculate that people with highly developed neurological processes” allow them to have an extremely well developed memory. Also they say that “savant skills are strongly associated with exceptional memory and strong pervasive processing with allows for establishment of outstanding early memories.

“When I was one and a half years old, I was on a ferry lying on red seats.” Zamoscik, et al. (2016) found that persons high on the spectrum not only answered questions about knowledge of early childhood events, but also had knowledge of their age at the time of having that experience. They state that before these, online self-reports, people on the spectrum were thought to have little or no ‘autobiographical memory’. These authors feel that these memories are important to both language acquisition and understanding the cognitive self. “…autobiographical memories shape the self, and the self-concept, together with associated personal goals, shape the types of memories likely to be recalled.”

56% I am who I am because of how I was raised. For the shy kid who doesn’t have a voice having a bunch around you that are loud and diverse helps to fill in the empty gaps.

My kids have a lot of gaps. I hope I’m loud enough to fill them all.

End of excerpts from Jeni’s book –

< My Thoughts >

Jeni’s book is open, warm and funny…and a little x-rated. Please read it to get the full impact of her very special take on motherhood. Let me just say –“Boo-ya Jeni!”

​Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts by Susan Senator, eBook 2006 Edition; an Extended Review with < My Thoughts > by Sara LukerExcerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).< My Thoughts > Susan Senator is the mother of three boys, the oldest of whom has autism. She is also the author of the The Autism Mom’s Survival Guide (for Dad’s too!): Creating a Balanced & Happy Life While Raising a Child with Autism (2011) and Autism Adulthood: Strategies & Insights for a Fulfilling Life (2016); among others.

Excerpts from the book >3% Making Peace with Autism is the story of a family – a husband, wife and three sons – and our struggle to incorporate our oldest son’s autism into our lives. With this book I hope to convey that despite the tremendous challenges that autism brings, you can find happiness as a family – even if you don’t find a miracle cure. Here’s how we’ve done it.We as a family are frequently hamstrung by Nat’s unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend’s party without first wondering, “Can Nat Handle it?” despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn’t, he can be just plain unpleasant, unhappy, or embarrassing in public.6% I talked and read to the baby in utero. I read all kinds of mother-to-be books. We were so well prepared that we didn’t think anything could go wrong. This illusion was deepened by our comfortable backgrounds and the fact that we lived in a society that promoted the idea of family life as a Hallmark card. I dreamed about my baby, yearned for his arrival, but in a straight-out-of-Hollywood way.7% Nat was a beautiful baby, with tufts of white blond hair and violet eyes. A docile infant, he was so enchanting that people often stopped me to admire him. My first moments with him were ecstasy. He was all potential. Autism was not yet even a cloud on the horizon. But almost immediately, there was the rumble of distant thunder.At the beginning, the signs were always fleeting, with a now-you-see-them, now-you-don’t quality. Everything I noticed or felt was subtle, flickering, momentary.All my questions were so easily answered, my fears so quickly dismissed by doctors, family, Ned, and even me.When did I first know something was amiss with Nat? Almost immediately. Something inside me told me that mothering a newborn was not supposed to feel so flat.At first the autism came in little bursts, bad moments here and there, sprinklings of disappointment in what he did or didn’t do.

​He didn’t actually look at me for any length of time until his fifth day of life, when suddenly his eyes were opened almost absurdly wide. My sister Laura visited us that day. A medical student, and an aunt for the first time, she was thrilled with this chance to bond with a baby, especially mine. Nat was fully alert and experiencing this world and it was a noisy, chaotic place for him. Laura and I noted his wide-eyed stare, thinking it was cute.

During Nat’s first week, I did express a few misgivings about the way he world throw up his hands at the slightest jostling or sound. “Why does he do that?” I asked my sister. It was easier asking her, a med student, than calling the pediatrician, whom I felt I was already calling too much.

That’s his startle reflex,” Laura explained. “Infants have that to protect themselves, to let them know something’s around.” But why did he do it so often? The least little thing would set him off. Arms shooting up, eyes wide. His body would explode in reaction to every sudden move or loud noise. It didn’t seem right to me, no matter what I was told about it.

According to Bogdashina (2016), “Many autistic individuals (who use one sense at a time), involvement of other senses can bring sensory overload.” She says, “Autism is a pervasive developmental disorder because it covers so many different areas of cognition. Yet for autistic individuals with sensory problems, the term ‘pervasive’ acquires a different meaning. It is pervasive because sensory problems are with them every minute of every day.” Certain behaviors, which sometimes become ritualistic, serve to help them when perceiving themselves in relation to their environment. A way of reacting that makes them feel safe.8% Ned’s awakening about Nat was gradual, while my alarm was almost constant, flashing on and off steadily. The first time I left Nat for a few hours with Ned, I felt certain the baby would die with me gone. I called Ned within the first hour of my outing.

When Ned answered the phone, he didn’t sound surprised to hear my voice. “Yeah, he’s fine,” he said. “Really?” I replied in disbelief. “Yeah, Sue, why wouldn’t he be?” He sounded amused but also slightly annoyed about my hysterics.

Even though he’s a computer geek, a mathematician, a numbers guy, he plays around like a dumb jock. When Nat and Ned played, things felt better to me, as if maybe there was nothing wrong, after all. Then, when Nat was five months old, a woman named Merle brought her baby, Quinn over to visit. Quinn was very interested in the world around him – almost ridiculously so. He squirmed and flailed his fat legs. He also made conversational noises. Seeing Quinn added to my concern about Nat and his lack of interest in the world.

9% Even though Nat hit the major developmental milestones on time, such as rolling over, crawling, standing walking, and even speaking his first words, his lack of interest in people and toys would gnaw at me.It made me want to stuff so much into every interaction, so as to get it all in before he looked away.

As for toys, he would set up his Fisher-Price dolls in a perfect line, but then he would simply stare at them. and suck his thumb. There they stayed on his rug, like little soldiers forever waiting for the call. I would show him how to do things time and time again, but it never took.

< My Thoughts > “I would show him how to do things time and time again, but it never took.”

Perhaps it was too soon, but Susan’s wonderful intuition was at work here. She tried to engage him where he wanted to be; on the floor.

‘Floortime Play-therapy…’ Retrieved from – https://www.stanleygreenspan.com/‘Floortime’ is a comprehensive program for infants, young children and families facing a variety of developmental and learning challenges. The program is called ‘Floortime’ because you follow the child’s lead, getting down on the floor when they do.

The whole family can learn to join in the child’s world (a little island on the floor), thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities through ‘shared attention’ and by beginning in ‘engagement’.

9% Nat could suck his thumb and stare straight at the ceiling, and block everything going on around him and feel calm again. By then he had apparently learned the defense of blocking out stimuli that were too much for him. But to me, it was the most bizarre behavior.

I felt terrible about Nat’s apparent indifference, so ashamed. Why doesn’t he like anything? I wondered aloud later to Ned. Ned shrugged and repeated his mantra. “He’s different. It’s OK. You’re not doing anything wrong.”

10% “Nat should be able to do more.” Silence. And then “Well, he can’t he’s his own person, that’s all. Don’t compare him to Quinn.”

“I can’t help it. It doesn’t seem right. He can’t play.” “He can play! He just did!” The tension between us grew.

11% Finally Nat began showing us how much he loved books, their predictability and comforting rhythm. Corduroy’s Day was a real turning point. It was momentous for us to realize that Nat could understand stories and be affected by them somehow. Something in his environment, something complex and with the potential to expand his world, was giving him pleasure.

By the time Nat was two, he loved books so much he had begun to memorize them. Our first conversations with him were mostly crafted out of lines from books: If I gave him strawberries, I’d say “Look, Nat, ‘one-two-three-four strawberries,’” from a waterproof bathtub counting book. We began to play fill-in-the-blank with Nat, starting a sentence from a beloved book and waiting for him to finish it.

When we played this way with him, he would reward us with happy book chatter and a wide smile. We found that we could use content from books to explain new concepts to him, too, a process that delighted and comforted him.

For instance we used lines from the book Corduroy Goes to the Doctor to explain that he would have to get undressed, get weighed, and get a shot. “Do I get a shot?” asks Corduroy. “Yes,” says the doctor. “We don’t want you getting sick.”

Though he mostly spoke by quoting books, his original speech, rare as it was, was breathtaking in its expressive imagery. Before too many months had passed from the time of our breakthrough with Corduroy, he had memorized the Velveteen Rabbit, a rather long and complex children’s book.

< My Thoughts > “…he mostly spoke by quoting books…”

Our Sonny is non-verbal, but he lets you know in no uncertain terms that ‘Toy Story’ must be on all day, in order for him to function. We even have a portable player hooked to the front seat headrest, so he can watch Toy Story in the backseat of the car. They are Sonny’s family. He becomes ‘animated’ with them, looks at them for hours, even coos to them and pats the TV screen. We do expand his viewing to other experiences, in case you’re wondering. Smiles.

He has dolls for each and every character…even Barbie and Ken who are in Toy Story 3. Whatever works to engage him…that’s my motto! And, who am I to deny him that comfort, that enjoyment? Besides, it comes in handy to be able to connect with him by saying… “Stop, I have a laser and I will use it!” Or, “Close that drawer…Stay outta my stuff!”

12% Overlooking his eccentricities, we began to feel confident that he was actually gifted. A tiny seedling of hope unfurled within me.

Ned could not let it go. “Have you noticed that Nat can’t answer a yes-or-no question?” he asked me one day. Ned underscored the point by asking Nat if he wanted a sandwich. Nat said nothing. Then I tried, saying, “Nat, want juice?” instead of an answer, he echoed back, “Want juice?” This, it seemed, was his way of answering “yes”. Ned was right; Nat’s language was sporadic, odd, and rote.

At Nat’s eighteen-month checkup and then again at two years, I brought this up with our new pediatrician. “Oh, he’s a little genius,” she said adoringly, as Nat stood in her large, poster-filled examining room and prattled away for her, occasionally flashing his dazzling smile.

And so I let my misgivings go again for a little while, as did Ned. Which parents would not want to think their child was a genius? I wasn’t fully convinced my worries were justified until I gave birth to Max.

Max allowed me to enjoy motherhood for the first time because now I was parenting a normal child. It was like floating, like falling asleep, like breathing for the first time in a long while. Unlike Nat, Max connected with me from the start, which made me feel confident that I was actually doing things right.

Max would look at me and look at me. We could not get enough of looking at each other. Ned couldn’t help but feel the contrast between his two sons, and more and more, he began to let himself see that things were not going well with Nat.

For my part, as my bond with Max strengthened daily, I could feel Nat slipping away. The voices in my head were getting louder. Something is wrong with Nat, they said.

13% To me, it was like a bad dream. Our sunny, silent, compliant little boy was changing into a stormy, loud, difficult child. “I don’t know what to do,” I said. “I’ve tried everything. You know I have.” He doesn’t like other kids! Is that so terrible?” was Ned’s reply.

My friend Merle said, “I think you need to take him to your pediatrician and talk to her about this.” “I’ve tried to talk to her!” I said to Merle. “She doesn’t think there’s anything wrong!” Merle shrugged.

14% We made a list of all the things Nat couldn’t do and brought it to our pediatrician. After reading it, she nodded quietly and gave us the name of a developmental pediatrician. Oh my God, I thought, my breath stopping in my throat. She’s not talking me out of it. She finally sees the same thing I see.

< My Thoughts > There is a formal checklist on the Centers for Disease Control & Prevention, www.cdc.gov/ActEarly. You can also find ‘Red Flags’ and an informal checklist on My Blog for December 2017.

14% We booked two hour-long appointments for an evaluation with Dr. E., a development specialist at a renowned children’s hospital in our area. He would see us in January, just after New Year’s. Having made the appointment, we didn’t discuss it. We just waited.

At the end of the appointment, Dr. E. told us he suspected something called PDD, pervasive developmental disorder, which, he told us, falls under the umbrella of autism. (Today, the terms PDD & ASD are often used interchangeably.)

The diagnosis gave me a heavy, cold feeling; I instantly knew it was accurate. I sat there without much to say at first, while it began to sink into my consciousness. But this was only the beginning of a very long process of understanding, of letting autism settle itself into our midst.

15% As for Ned, he told me later that he had felt mostly relief when he heard the diagnosis: relief that he finally knew what we were dealing with, so that now we could begin to work on it. Ned didn’t let on that his heart was breaking.

“So does this mean he’s autistic?” I asked Ned. “Is that what he really said?” “Yep, that’s what he said,” Ned sighed.

16% Our families, my close friends, and certain of his teachers all became part of what we called Nat’s cult, people who believe that he is capable of much because that’s what they want to believe. Nat’s cult has been our lifeline.

< My Thoughts > In this part of her book, Susan has a very valuable part called “Suggestions for Getting Through the Early Days, After Diagnosis.” Please find and read this and much, much more.

19% Doing research occupied me fully and gave me a sense of purpose. As for Ned, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help Nat.

My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.

I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told Ned about the meeting, but going to support groups was not his thing.

< My Thoughts > “Support groups…”

Some parents who joined online support groups for parents of children with disabilities stated that overall it was helpful. That sometimes you have to ‘shop around’ to find what fits your needs, because many groups take a one-size-fits-all approach.

Studies show that parents seek out support groups for vary different reasons. There are those who are looking for ways to cope with the news. Others, who are seeking information, resources, and strategies to help them make connections, take action and move on.

Some parents want to find a support group in their area, or a group that they can identify with… such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being. Or, parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Or parents who have several children on the spectrum, or a large family with only one child on the spectrum.

26% I was beginning to understand that our dealings with the school system as a business relationship where both sides want something: The school district wants to provide an education program that follows the law – in other words, one that is as typical an educational experience as the disability will allow – and that addresses the child’s needs, yet is also the most cost-effective.

Parents need to understand this and still find a way to get what their child needs. The parents want their child to improve to the greatest degree possible, and they want the child eventually to be able to live as normal and productive a life as possible. The two sides are not necessarily at odds, but there are tensions inherent in these positions.

As we learned more about autism and our doubts about Nat’s placement grew, we decided to take him to some new specialists, people who worked outside the school system, to get more information on exactly what Nat needed.

Because she saw so much potential in Nat (a renowned psychologist) said, “I would rather say that he has an expressive language disorder with autism-like tendencies.” Of course, this still amounted to autism… with shades of the same basic diagnosis: pervasive developmental delay, autism spectrum, atypical development.

She also offered the additional benefit of connections: She knew everyone in the various private autism programs in our area, and she had an idea which programs would be good for Nat and which would not.

She also referred us to a neurologist, Dr. B., a celebrity in autism circles. He was one of the pioneers who had proven that autism was neurologically, rather than psychologically based. He did a full workup of Nat. She was the first to use the term “autism spectrum disorder” to describe his condition. She spoke about Nat optimistically, saying that with more of the right approach, kids like Nat can certainly improve. By the time we left her office, we knew that Nat needed a one-to-one student-teacher ratio; a very small class; some typically developing role models; and intensive, around-the-clock behavioral therapy. All in all, we felt strengthened by her assessment.

27% Through the years we have been struck over and over again by the depressing, drab look of Nat’s potential placements. Very few of them actually look like schools, full of creative learning opportunities and happy days. Max’s schools have always been bright, messy, thronging places filled with children’s projects, things hanging from the ceilings, off walls, poking out of the desks.

Nat’s schools, by contrast, look as if their equipment came from the reject pile, with a few battered toys, a few books, and outdated computer. The injustice that our kid’s not only autistic, but his school is also depressing.

28% Nat went to the new school the fall that he turned five, about six months after we visited. When Nat began the new program, we found out, to our great pleasure, that Dr. E. had been right: Nat showed dramatic improvement within weeks. He quickly developed classroom skills such as attending (listening), participating with the group, and answering questions.

He learned to take turns and actually played with Max for the first time (a game of Candyland). He began to be able to tolerate transitions. He even wore a costume and sang in a school play at the end of the year.

Radley, et al. (2017) evaluated the effects of the 5-week ‘Superheroes Social Skills’ program which target social skills training and generalization for children with autism. These lessons targeted nonverbal skills, participation, requesting and conversation in a structured social setting. Participants practiced approaching and conversing with a partner appropriately, learning turn-taking without interruption, and making an appropriate comment and/or greeting. Parents reported improvements in their child’s social functioning as a result of attending this program.

Cotugno (2009) studied a 30-week social competence and social skills training and intervention program for ASD children ages 7-11. Participants were children characterized by their failure to develop age-appropriate peer relationships, or a lack of interest social reciprocity. These children were most often preoccupied with narrow, rigid inflexible interests which led to significant problems in engaging in normal and typical peer interactions. As a result of the program, parents said that their child was able to acclimate to a social situation and manage their anxiety effectively. They were able to enter into structured social activities and get ‘unstuck’ without someone’s help, thus also joining in to ‘unrehearsed’ social situations in a spontaneous manner.

28% Nothing lasts forever, though, as I have discovered. Programs have their life cycles. Children’s needs change, and staff members come and go.

< My Thoughts > At this point in the book, Susan addresses school programs in her chapter – What We’ve Learned About School Placements. A ‘must’ read.

36% Nat’s behavior was stressful. We didn’t know why he had to act out, why he had to use his little bit of connection with the world to annoy other people. Nat seemed immune to reasoning. Some of the confidence that we’d enjoyed went away.

37% During a walk with my parents, I complained about the shortcomings of Nat’s placement in the school and behavioral program. They sympathized with my fear that Nat was going to regress, and they agreed that I knew him best and was probably qualified to teach him.

During that walk the homeschool scheme was transformed in my mind into a more realizable plan: an afterschool homeschool.

I would develop the curriculum, educational goals, and activities suited to home life and leisure time, but rather than trying to do the teaching myself, I would hire a tutor.

Our first foray into a tailor made, home after-school program for Nat worked very well. Liz (the neighbor’s nanny) was young, enthusiastic, and bursting with love for Nat and Max. Her presence added something to our home life that I had forgotten about: relaxation.

40% When he was seven, Nat began waking up in the middle of the night, laughing hysterically. Sleep disturbances are not all that unusual for children with autism.

I got a referral to a child psychiatrist from one of our doctors. He prescribed Clonidine without hesitation. The first night we gave Nat the Clonidine, he slept through the night. This was our first encounter with a miracle drug. We slept, and we felt like newly released prisoners. To this day, Nat still takes Clonidine.

< My Thoughts > on medication… Finding the therapeutic dose (like the Goldilock’s porridge ‘that’s just right’), working well with his other meds, yet keeping him from being drugged out and staggering around.

Please read Susan’s book chapter on “Deciding Whether to Use Medication”, it’s such a worthwhile read.

If I haven’t said this somewhere before, the whole medication ‘thing’ is huge to a family just starting to try and get help. Without a diagnosis you can’t get the necessary medication for your child. Start with a referral from your pediatrician, which most insurance companies require. If your pediatrician is not comfortable with taking those steps, ask if they will refer your child to a neurologist who specializes in Autism Spectrum Disorders, or Developmental Delays, or Attention Deficit Hyperactivity Disorder. Check out private companies in your area which can do a professional diagnosis.

There are many places you can begin the search to look into funding your child’s evaluation and assessment. If one or both of the parents has been in the military, there may be funds there. Other sources are of course insurance companies with that provision in extended coverage.

Or, even look into nearby states where they may have more resources and maybe shorter waiting lists. Call state’s Attorney General’s offices for help. But first, check with programs in your area and see if they can give you a contact person or organization that can help you. Ask any children’s charities and foundations in your area and beyond. Empty all pockets…funding alone can be a fulltime job. Get friends and family to help make contacts to their affiliations…this is not for the faint of heart!

Drugs come with a price. This is both a figurative and literal statement. First of all…all drugs have side effects…not all side effects are good. Sometimes you need an additional med to deal with the damaging side effects of your child’s main meds. Our son’s insurance company pays $8,500 per MONTH for his medication. The most expensive of which is his seizure medication, but without it he has very little quality of life.

And, many children and adults with autism spectrum disorder (ASD) have co-morbid conditions; meaning that there are often other underlying disorders which need to be medically treated. The short list would be – epilepsy, obsessive-compulsive disorder (OCD), Tourette syndrome, Attention-deficit hyperactivity disorder(ADHD), anxiety and sleep disorders. There are very effective drugs for all of these. Keeping in mind that they have to work together which is why it is critical that your child’s doctors work as a team and that they are clear on who is prescribing what and how the meds with enhance one another.

This is very important. Your pharmacist also has the whole drug picture so you want to make certain that one pharmacy is handling all of your child’s medication. Some states/insurance companies/doctors require that your child’s drugs have someone to oversee all of them. A ‘medication manager’, or ‘pharmacological psychiatrist’ (aka licensed in Psychiatric Pharmacology/Psychopharmacology, who is able to prescribe ‘controlled substances’ for children and adults). Just to be on the safe side.

43% We saw that Nat’s behaviors were the result of a combination of elements: his personality, growth factors (such as hormonal changes), and his autism. There is no way we could “fix” it all – no way to make him completely acceptable to the world. But, we decided, that what we can improve, we will, and medication offered opportunities for improvement.

91% What autism has taught us is that we can do many things to prepare Nat for adult life, to help him participate in the world, and yet it’s painfully clear that the world still is not ready for him. Nat’s brothers continue to buzz around him, interacting with him differently with each new phase of theirs. I still try to find a common denominator for all three.

Last summer, discovering that they liked water fights, I excitedly bought three huge Super Soakers at the drugstore because I knew that for around thirty dollars I was going to get at least a good hour of all three brothers playing together.

92% But while Max and Ben sprayed each other playfully, Nat seemed startled every time they got him. He didn’t even think to squirt them back. He just kept squirting his water onto the grass, mesmerized by the stream. They he’d get hit in the face by Ben or Max, and he would look up, puzzled, and wipe his eyes, returning his glance to the stream of water from his own gun.

Finally I said, “If you don’t like it, Nat, squirt Max!” “Yeah, Nat, squirt us!” After more coaching from his brothers, Nat figured out how the game was played. But we could tell he still preferred to watch the water stream out of the gun onto the grass. It’s OK, I thought, as long as he’s out here, doing basically the same thing as the other boys.

3% Nat’s room is a capsule of who he is: stuck at different ages, flashes of toddlerhood mixed with various attempts to broaden him.

Little Ben is just beginning to realize that his oldest brother rarely answers him, may laugh at him when he cries, and breaks apart his Lego structures but has no interest in building anything. Recently he asked me if Nat’s brain is “broken.” He is learning the hard way that his biggest brother is someone to avoid, a dead end, even; also that sometimes life can be painful and make no sense.

94% There is no cure for Nat’s autism, no one good approach, and no way out. There is only the five of us. We help Nat become the best he can be, and in the process he makes us who we are. Because of this strange and terrible gift, we cannot be typical, we cannot be normal, whatever that is. But this is certain: We are OK. And we stand together, sometimes against the autism, sometimes against the world. But always together, as a family.

(5% indicates location in the Kindle version of the book, instead of page numbers.)< Excerpts from Paul Brodie’s Introduction >5% This is my experience and understanding of a major influencing aspect of my life, through my own lens of perspective, presented as such.Secondhand autism, as a phrase, incorporates the negative connotation of secondhand smoke with my struggle in relating to autism and represents my experience, personal and observed, with what autism does to the family members of the individual with the diagnosis.3% Secondhand autism, just like autism itself, is a unique condition, sometimes at odds with itself. Although autism is unique to an individual the effects reach parents and siblings without prejudice.< My Thoughts > “…what autism does to the family members.”Green (2013) says “a child with autism within a family unit presents a unique set of circumstances for the siblings to navigate. A lot depends on whether or not there is a strong family system. Autism is frustrating and siblings are sometimes affected in either a positive or negative way.”Excerpts from Paul Brodie’s book…23% Scott could not be autistic on his own. Our family has all been autistic with him.15% Autism in my family – Scott was just about 3 years old when my parents first took him to a doctor with questions about his development. He was on track for the standard age-graded stages of development – crawling, walking, and talking, etc. – until he seemed to regress, starting between 18 and 24 months.

​Scott is the fourth of my parents’ six children: Laura, me (Paul), John, Scott, Alison, and Shannon. Alison was born around the time when Scott’s abnormal behavior started making my parents worry.Initially Scott’s change in development was thought to be a reaction to my sister Alison’s birth.

Initially Scott’s change in development was thought to be a reaction to my sister Alison’s birth.

< My Thoughts > “Scott’s change in development (regression)…”

There is a study by Goin-Kochel & Myers (2005), questioning parents’ beliefs about the causes of their child’s regression. The results were three-fold. One, the belief was ‘genetic causes’; two, the belief was ‘external triggers’, and three, the belief was a ‘combination of both’ genetic and external.

In this 2005 study, participants were asked to share their views on what possible ‘genetic factors’ might be relevant to their autism. Some of the factors cited by parents were – “I think he always had autism.” “She was extremely hyperactive and hyper focused and became very demanding…” “My grandmother has similar symptoms, but was never diagnosed.” “My husband’s father is socially odd.”

‘External factors’ cited by participating parents in the 2005 study were – “I think that his digestive system may have been immature and that he may have had casein allergies which contributed to the heavy metal build up from his vaccines. He experienced major regression immediately following his vaccinations (DPT) & (MMR).”

Participants In this 2005 study shared their thoughts about ‘both the genetic and external factors’ they felt were involved. Ideas cited by parents were – My son was “genetically predisposed and all the autistic symptoms were aggravated by mercury in vaccines and other environmental injuries.” “I think people are genetically predisposed and then something, probably prenatal, triggers the changes in brain structure that characterizes autism.” “I honestly do not know. Maybe vaccinations, maybe gene combo, maybe I ate too much tuna.”

In addition, one parent participant in the 2005 study cited under: ‘Other factors’ – “I think for my child it may have been trauma at birth, or, the result of having two caregivers, each with very different approaches, one too strict and one to permissive.”

58% I hate autism because, in my limited perspective, it seems to prevent Scott from having and experiencing things that I think he should get to have; things that I have experienced and am grateful for.

< My Thoughts > “I hate autism…”

Orsmond & Seltzer (2007), “The life-stage of the sibling and the life-stage of the individual with autism, influences the companionship and caregiving experience,” and the sibling’s feelings about autism.

Sicile-Kira (2014), “Some of the behaviors exhibited by children with ASD would be typical of a younger child’s behavior. But it is harder for a sibling as time goes on and the behaviors continue, or are replaced with even more ‘interesting’ ones,” even when the child becomes an ‘adult-child’.

61% Essentially, we were Scott’s caregivers along with our parents. In a way our sibling role was associated with a co-worker role, and in some ways a parent role.

< My Thoughts > “…we were Scott’s caregivers along with our parents.”

Orsmond & Seltzer (2007), tell us that parents and siblings often share the ‘companionship and the caregiving’ of the family member with autism. That the more positive or negative effects of these relationships depends largely upon the maturity and coping strategies of the people involved, as well as the degree of disability. They also indicate that a same gender connection may be important with siblings, but that there hasn’t been much research on ‘mother-child versus father-child’ relationships.

62% We engaged in sibling rivalries as younger children, but I don’t remember much of that past elementary school for myself. Laura and John and I might have just naturally grown out of it by that point, but that was also the time when Scott was diagnosed with autism.

< My Thoughts > “We engaged in sibling rivalries…”

“Siblings of individuals with autism have been reported to have less conflict in the sibling relationship and more family resilience and increased self- perceived competence. In general, they show a more positive opinion of the sibling relationship, Green (2013) points out.

62% I know the responsibilities that came with caring for our brother accelerated our maturation in some regards; I think one of those ways was in how we related to each other. Shannon and Alison have both experienced what it is like to ‘out-develop’ an older sibling.

< My Thoughts > “…caring for our brother accelerated our maturation…”

Smith & Elder (2010), found that was “Greater admiration and less quarreling behavior among siblings, which allowed them to thrive.” That this sort of “sibling adaptation was necessary for sibling maturity and that both genders adjust better if older than affected sibling.”

74% Laura (33 years)I was ten when we started to notice behavior changes, like taking poop out of his diaper and smearing it on the wall. I remember his losing his verbal ability. He actually stopped using words… It was really weird. I remember distinctly going to the hospital to visit Mom when Alison was born, so Scott was almost 25 months old … and he freaked out.

For the next several years, it was like having two babies. I felt more like a third parent than a child. Scott even called me Mommy for awhile.

Although my memories of that time are fuzzy… I remember often thinking back then that Mom and Dad changed when Scott was diagnosed. They weren’t as happy and carefree as they previously had been. There was a new sadness and seriousness about them.

< My Thoughts > “There was a new sadness and seriousness about them.”

“Parent stress,” according to Thompson (2012), can drive an emotional wedge between parents.”

75% I remember how someone was always on ‘Scott duty’ when we went out. It usually meant actually holding on to him…so he wouldn’t just run off.

< My Thoughts > “… holding on to him… so he wouldn’t just run off.”

Children with autism often feel compelled to flee from their environment. The situation or setting doesn’t seem to matter; they just take off to parts unknown. Now we parents can take some comfort in knowing that there will be a new law put in place. We will have Avonte’s Law Act of 2015, which was named after the missing Queens, N.Y. teen who was found dead, days after slipping unnoticed out of his special education school and off the school grounds into the nearby neighborhood where foul play took place.

This law amends the Omnibus Crime Control and Safe Streets Act of 1968 to authorize the Attorney General to make grants to law enforcement agencies to: (1) reduce the risk of injury and deaths relating to the wandering characteristics of some individuals with autism and other disabilities, and (2) safeguard the well-being of individuals with disabilities during interactions with law enforcement. This law was proposed by Senator Chuck Schumer and introduced in the Senate on January 13, 2015.

76% I’ve found myself watching my own young toddlers closely for any signs of autism-like behavior.

< My Thoughts > “…watching my own young toddlers for any signs of autism-like behavior.”

Many of the autistic behaviors we see in children with autism are those behaviors from an earlier developmental stage. It’s when your child doesn’t replace the behavior with a more age appropriate one that it becomes a red flag.

77% My parents, siblings, and I have had difficult experiences due to Scott’s autism, but those experiences have brought us closer to one another as we have relied on each other for support and have served Scott together. I hope my small acts of service for Scott have made his life better, too. I love my brother!

< My Thoughts > “…my small acts of service…”

Sicile-Kira (2014), “The older sister may well feel responsible for a younger sibling with ASD and try to mother or take care of him.”

77% Paul (Me, 31 years) I was six and a half when Scott was born, which made me nine when he was diagnosed with PDD-NOS. I remember getting picked up from elementary school by my dad one afternoon. He told us about Scott’s diagnosis. That is all I recall from the moment, just a few frames in my mind. I don’t know if that was for the PDD-NOS diagnosis or for autism two years later.

< My Thoughts > “He told us about Scott’s diagnosis.”

Harris & Glasberg (2003), “siblings require someone to listen, respond to individual needs and communicate accurate information about autism appropriate to their developmental stage.” They also need to have it explained to them that there are “unknown challenges ahead awaiting the family of a child with autism.”

78% Another early memory was at school standing in line with my best friend, Jeff… I recall telling him that my brother was autistic. He said something to the effect of, “That’s cool, so he can draw really well or something?” I said, “Autistic, not artistic.” And this began my life of trying to understand autism and explain it to others.

79% …Being in public was extremely difficult for me because I had irrational thoughts and fears of attention. This made it extremely difficult for me to take Scott anywhere, just me and him, or to be with him at all in public as he often invited attention. My anxiety would engage and though I know the attention was on him, in the moment I couldn’t think like that and I would be painfully uncomfortable.

Thankfully, I’ve been able to work through the anxiety pretty well for myself, but even now, at 31…I still feel anxious thinking about taking Scott somewhere by myself.

Green (2013), “Siblings experience empathy, sympathy, fear, anxiety, and social isolation. They also become frightened of the child’s abnormal behavior, but this is usually overcome by a strong sense of responsibility and feeling obligated to help their parents, and to protect the individual with autism.”

80% I still have moments of worry and obsession which I attribute to living with autism, but for my parents it is constant. I worry about the effect of Scott’s autism my parents’ health – autism isn’t communicable, but it does have collateral damage.

< My Thoughts > “the effect of Scott’s autism my parents’ health.”

Miranda (2015), “Deterioration in parental health can occur due to stress and lack of emotional support.” “Sadness and discontent can drain parents of energy and make them question their parental abilities.”

81% One of the worries that lie dormant in my mind, surfacing briefly every now and then, is that my children will be autistic. My daughter Megan is just under a year old and she often bites her hand in the same way Scott does – between the thumb and index finger. But only briefly and quickly moves her hand around to suck on her fingers … or to move her hand in and out of her mouth manipulating the sound of her singing. Every time her hand is in that position in her mouth I think about Scott and worry that Megan will be autistic.

< My Thoughts > “I think about Scott and worry that Megan will be autistic.”

Because autism rates have increased greatly, over the last 15 years, many siblings worry that it may show up in their offspring. In a very recent lab study, discussed in the May 2015 edition of the Medical Laboratory Observer, a research team from Johns Hopkins “compared the gene sequences of autistic members of 13 families to the gene sequences of people from a public database. They found four potential culprit genes and focused on one protein, CTNND2.” They believe this protein plays a key role in infant brain development.

83% Between my own experiences with anxiety and my firsthand exposure to autism … I was drawn towards psychology. I found I really enjoyed learning about how the body works, especially the brain. I learned a lot that helped me to understand autism and life influenced by it.

87% My biggest hope is that autism will be cured. My greatest despair is that it won’t happen time for my brother or my child.

92% I believe that whatever the origin of autism, something effects the development of the brain at critical moments. But it is strictly ‘sometimes’ and in ‘some cases’.

Secondhand autism is not terminal. Autism does not typically include any shortened life expectancy, nor does secondhand autism. But, autism is for life. Secondhand autism is less about the physical effects on the family members than the emotional and personality effects.

< My Thoughts > “Secondhand autism is less about the physical effects on the family members than the emotional and personality effects.”

Sicile-Kira (2014), agree that “No matter how bad the situation, there is always a solution. And mainly it is the parent attitude that will make the difference.”

68% John (29 years)Having a little brother with severe autism has made me more conscientious and able to understand people better. I say this because I had to learn to communicate with Scott in ways other than normal verbal communication. He has learned a few words in his life that he can speak and sometimes he can express a few thoughts via typing or writing.

< My Thoughts > “has made me more conscientious and able to understand people better.”

Laura Green’s paper (2013), concludes that while most studies are based on families is crisis, there is ‘qualitative data’ that represents those sibling of children with ASD, “who are well adjusted and happy adults.”

69% I never put much thought into it before, but now I can see that Scott communicated with me through body language, eye contact and even past experience.

When I say ‘body language’ the first thing that comes to mind is how he would get very frustrated and bite his hand and jump up and down as he made different loud noises. He bit his hand so hard that it developed a callus.

Ironically he used some of the same body language when he was excited, by jumping up and down and making loud sounds.

< My Thoughts > “Ironically he used some of the same body language when he was excited, by jumping up and down and making loud sounds.”

Some parents need extra hyper-vigilance for this very reason. One learns the difference between a happy tantrum and a not so happy tantrum. Our non-verbal son was ‘in trouble’ for either kind, in the classroom, unfortunately. I say unfortunately, because he was just using the same communication for both emotions, making it confusing for others. But it was an economy of language-communication, from his perspective, I suppose. Whatever works!

69% Eye contact can be rare or empty with autistic children. Sometimes it was just him telling me he was frustrated or angry. Other times it was much more spiritual and I felt like he was searching my soul with his gaze. I always felt like I had a special connection with Scott, more than by other siblings.

< My Thoughts > “I felt like he was searching my soul with his gaze.”

As noted before in the piece by Barry & Singer (2001), children with autism can be taught to interpret facial expressions and emotions by reading another’s eye-gaze.

70% I knew most of what he liked and didn’t like. He really liked going outside to jump on the trampoline…so I knew what pleased him and where to go and what he was going to do when he got there. And, he was pretty obvious in his discontent.

I never had my dog eat my homework, but I did have Scott rip it up or write all over it a few times.

71% Being a father of two sons now I have thought of what a different life we will have if either ends up being autistic. We have greatly enjoyed watching our toddler learn and grow and develop. To think that all of that development and progression would basically stop and my son could be 2-years-old for his whole life is a sobering thought.

< My Thoughts > “To think that all of that development and progression would basically stop and my son could be 2-years-old for his whole life is a sobering thought.”

I can remember hearing a young mother watching children playing in the park and saying… “He/she is sooooo cute…don’t you just wish we could freeze them at this stage…Ha…ha…ha.” Whoa! We now call those children autistic. Not so desirable or funny anymore.

71% This has influenced our decision to delay vaccinations until our sons are older than 2-years-old. …we feel like there is a link to vaccinations and developmental disorders; and if not the cause of autism, at least not worth the risk of SIDS (Sudden Infant Death Syndrome). And that whole debate over autism and vaccinations has been very polarizing and political. Whichever way people believe is the truth they should at least be able to talk about the issue in an open manner.

< My Thoughts > “And that whole debate over autism and vaccinations has been very polarizing and political.”

This is a double-edge sword because many public school or state funded programs will not allow your child into their programs without the ‘proper’ vaccinations.

73% I am sure that my brother was picked on in school…I just hoped that there were other kids like me around to stand up for them. I also hoped that the school administration would supervise the students and protect the handicapped children better.

I love my brother and am grateful for having him in my life…I try to keep a positive outlook on my family’s life with Scott.

65% Alison (23 years )I am never embarrassed at anything anymore since doing theatre; but put me in a store with Scott and my stress hits a peak and I think about it all day and I feel bad for Scott.

There’s definitely a lot of guilt felt by all of us. We all feel guilty going off with our own lives while Scott just sits at home on an iPod watching movies, but that is what he is comfortable with, that’s what he wants to do. Whenever we take him out of the house, Scott gets agitated and asks to go home.

< My Thoughts > “We all feel guilty…”

Orsmond & Seltzer (2007), say some of the reported negative aspects of sibling relationships are provoked feelings of anger when child with ASD is aggressive. Along with having feelings of guilt for not helping the parents more or wishing for more of the parent’s attention.

66% I took Scott out a lot to restaurants and stores and it was very stressful for me to even be in the car with him because I was afraid he would jump out of the car randomly (which he has done a few times). Some days, he wants to go do something, but most days he wants to say inside.

I would get upset that Mom and Dad couldn’t go places together. I wanted them to come together when they saw my shows. Having them come separately made me feel like I wasn’t first priority.

67% Every child needs to think they are their parent’s first priority once in awhile, I think. With Scott, every one of us knew he was first priority, and we would never be able to feel like we came first… I think it makes you a better person in some ways.

< My Thoughts > “I think it makes you a better person in some ways.”

“On the positive side, many siblings develop a maturity and sense of responsibility greater than that of their peers, take pride in the accomplishments of their brother or sister, and develop a strong sense of loyalty.” Sicile-Kira (2014).

67% One time…Scott seemed agitated and wanted something from the fridge. I walked by and saw so I stopped to open it for him. I was having difficulty with the combination lock… so he suddenly pushed me towards the fridge, really hard. I think that was the moment I realized Scott had the temper of a toddler, but the strength of a man…

< My Thoughts > “I realized Scott had the temper of a toddler, but the strength of a man…”

Green (2013), “Siblings eventually develop awareness that the individual with ASD is often unable to control their behavior, resulting in some forbearance on the part of the sibling.” Eventually they realize that they are unable to control an unwanted behavior…” Resulting in the sibling feeling unsafe and anxious when left alone with them.

68% Although he cannot be cured, he does have the skills to communicate better. He used to read one of his picture books all the way through out loud by himself. That went away.

64% Shannon (14 years)I think the first time I really realized there was something wrong with Scott was when I was around 8 years old, when I started having friends over for longer than a few hours. I had to train my friends not to leave valuable things around the house because Scott might get to it or move it somewhere unsafe.

< My Thoughts > “…my friends …”

According to Orsmond & Seltzer (2007), many siblings “reported feeling lonely and that they had no friends.” And, those with friends reported “they were unable to explain autism to someone outside the family.”

“And, how can a sibling feel comfortable inviting friends over, knowing her older brother with ASD may come running down the stairs with no clothes on at any moment?”, Sicile-Kira (2014).

64% They would ask me why our refrigerator had a lock on it and why we kept all the doors locked at all times. Before my friends started questioning me, I always thought it was a normal thing to have everything locked at all times, nothing strange.

When Scott got out of the house multiple times, I didn’t like how upset Mom got. I guess that’s why whenever we went out I would pay close attention to Scott, because I was afraid Mom would be upset if he got away.

< My Thoughts > “Scott got out of the house multiple times…”

“All the training, home alarm systems and other supports that can be put into place to keep a child who is prone to elopement safe are not foolproof. Bolting, running, or wandering is common among the autism population,” according to Autism Speaks.

65% I remember it being hard for Mom and Dad to plan things because they had to take turns going to school or church events.

When I was younger than 8, I remember being afraid of Scott, not really afraid that he would hurt me or anything like that, he was just different than all of my other brothers and sisters.

< My Thoughts > “…he was just different…”

“…many younger siblings wonder if their brother or sister will get better or not.” Sicile-Kira (2014).

65% Scott never calls me by name; he only ever calls me Baby. I don’t mind it, I think it’s funny. I guess he only remembers me as a baby and got used to that.

< My Thoughts > “…he only ever calls me Baby.”

Scott and Shannon seemed to function very well within the family unit. Usually, younger siblings of persons with autism may become the brunt of that child’s aggression because the infant is seen as an intruder into the well-defined world of the autistic.

Barry & Singer (2001), found many families in crisis because of the autistic child’s aggressive behaviors towards the infant. These families solved the problem by finding a program designed for retraining the child to learn appropriate replacement skills. “The child learned to interact with his infant brother in new ways. As the child’s aggressive behavior was reduced, the parents allowed him more access to the infant.” “As the sibling relationship develops, there is ‘continued intervention’ provided and more complicated skills will be taught.”

(End excerpts from Sibling Notes)

93% Secondhand autism does not exist. It is simply a term to refer to the emotional and personality effects that autism has on a family member of an autistic person.

< My Thoughts > Sibling relationships…

Harris & Glasberg (2003), “Sibling relationships endure long after other friendships are lost, and parents die, but sibling relationships continue into old age.”

End excerpts from book.

< My Thoughts >

This insightful account of their family’s sharing of what becomes their definitive truth that the whole family was impacted by secondhand autism, was especially powerful to me. Each page has valuable information on it. My excerpts have only given you a brief view into this world.

​Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen, eBook 2011 Edition; an Extended Review with < My Thoughts > by Sara Luker

(1% indicates location in the Kindle version of the book, instead of page numbers.)

1% He twirls and dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.

​Do you see him? How he smiles slyly, how he sees you looking, how he hears everything and sometimes nothing. How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.

​He needs nothing. He just plays. He looks through books. He plays on the computer. He says a word to his brother Griffin, who wants most to thrill Ezra.

He doesn’t need us, not at all the way we need him. The three of us – Griffin, their father, Michael, and I – we follow Ezra, reaching for him, desperate in our love.

Ezra hugs and kisses us, he smiles, he gazes with affection. He doles out his love in necessary amounts. Who is this child whom I could not live without?

2% His teachers and therapists spend endless amounts of energy trying to make him want more, but I am secretly envious of his self-containment.

But now he wants something. His want is simple. He wants more milk. He’s been talking for two and a half years now, but for reasons known only to him, he refuses to use this word.“What was that Ezra? You say you want milk?” “Say yes,” I tell him. “Say yes, and I’ll give you milk.”

I know what he wants. He knows I know what he wants. But now I’ve got it in my head that he has to say “yes,” that he has to use the language I want him to use. It is one of the many dances Ezra and I go through. He does the same dance with his dad.

“Y-e-s,” I say. “What’s that spell?” “Whys,” he answers. I frown. “No, Ezra, not ‘Whys’. Y-e-s.” “Whys,” he says again… his face breaking into a smile.

“Whys.” He erupts into laughter. Oh, I wish you could see him, the way his eyes are like prisms of lights. “Ezra,” I say. I’m smiling now, too, impossible not to when he laughs like this.

Ezra, I say. “Tell me what does “Y-e-s” spell?” “Whys!” he can barely get it out he is laughing so hard. “Y-e-s!” “Whys!” “Whys, whys, whys!”

I break into laughter with him, giving in to him and his world. Why does it take me so long, when we are both so much happier here? We say the new word together again and again. “Whys, whys, whys!”

2% The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. She is a nice girl, a little awkward, who seems to love Ezra from the start. As she’s about to leave I hear, “One thing I want to say,” she starts. I wait. I have no sense of the huge thing she’s about to say, no sense that life will forever be altered.

“I think Ezra’s on the autistic spectrum,” she states. Here’s what happens to me in this moment: An electric bolt shoots through my body. I think, “Please God, no.” She lists a couple reasons. Because that one small exchange effectively ended my innocence as a mother.​I want to claim that time back. I want to go back to that moment when she said that. I would never be the same. My son was stolen from me. How dare anyone take that process of discovery from me.

< My Thoughts > “I would never be the same. My son was stolen from me.”

Retrieved from: https://fullmetalheart.com/index.php/2016/07/06/but-autism-stole-my-child/ Nora from North Dakota exclaims on her blog, A Heart Made Full Metal, that when she hears parents say that autism stole their child she weeps bitter tears for them.

“Autism gave me my freedom. Autism gave me my voice. Being autistic is who I am. It’s helped me understand on a level I wouldn’t otherwise,” Nora continues.

“But, I’ll be the first person to admit autism isn’t all skittles and sunshine,” she says. “There are times that suck so much. Such as when I’m clasping my hands over my ears and crying because of the sound of fireworks. Such as having the words literally trapped inside me and being unable to speak. Such as not being able to wear what I want due to sensory issues. And, such as avoiding certain foods. But at the same time, there’s beauty in it.”

“One of my favorite feelings is standing outside and feeling the fresh, warm sunshine against my pale skin and a gentle breeze brushing my hair. This is my happy spot. This is freedom! For me autism is freedom. Autism is life. Autism is who I am, Nora from North Dakota.”

3% He is fine. His autism, even, is fine. Ezra’s autism changed us, yes. This moment held inside it everything that has been harmful to us about his autism. Because the babysitter’s words took me off my own instinctual track as Ezra’s mother.

4% I don’t believe in the small-window-of-time theory any more than I believe that all parents need to be anxious to change how their children interact with the world.

Any more than I believe a child with autism can stop being autistic through therapy, or that autistic people don’t come to their own understandings once they are ready, regardless of therapies, just on a different timeline from others.

Nobody seems to think about the harm that can come to a family, to a child, from pushing them into the world all special needs families must enter, one full of evaluations and interventions and schedules and do something fast now – quick, or else.

The overwhelming pressure to follow proven scientific guidelines about early intervention often steals parents’ courage to follow their instincts and blinds them to their baby as just that, a baby.

This isn’t cancer, after all, with cells that will grow and spread. This is a neurological difference. A difference that will not ever become as not different as those early-intervention pushers seem to want everyone to believe.

In one of the child psychology courses I took to become a psychotherapist, I learned the abstract facts about autism. Autism is essentially, a constellation of symptoms. I learned about autism as a catastrophe. I was a student, taking neat notes during the lecture, Ezra growing in my belly, a little fish, twisting and waving, becoming.

5% Tonight, I learn about autism from a parent’s perspective: the red flags that include not pointing or waving by twelve months, neither of which Ezra does.He hasn’t adopted any of the sign language I’ve been diligently trying to teach him since he was nine months old.

But there’s so much I read about autism that doesn’t fit Ezra. He had normal eye contact, at least once he is comfortable with someone. He initiates peek-a-boo and chasing games. He plays normally with most toys, albeit sometimes in rigid ways.

He engages us as long as what we are doing interests him. He’s affectionate and doesn’t mind loud noises or sudden changes or if we want to join him in his play or mess with what he’s already doing. He’s one year old, a baby still. It’s so hard to know.

At eighteen months Ezra learns sign language for “more.” I have been trying to teach him for the better part of a year. Pushing my fingertips against each other again and again, saying, “More, Ezra. Look at my hands. More, More.”

I’m handing him one cheese puff at a time, urging him to ask for more. He looks at the bag, leans toward it, says, “Mm mm mm.” finally, he does it. He presses his chubby dimpled hands together. He watches them as he does. “More!” I yell. “You signed ‘more’!” I hand him the puff and he sticks it in his mouth, unfazed.

When Ezra is almost two years old, he still isn’t consistent with sign language and he has no words, so I think about pursuing outside opinions. I call Early Intervention first, a state program that is mandated by federal law.

“What sorts of things are you concerned about?” the coordinator asks me on the phone. “I’m not concerned,” I say. I’m aware I’m pacing as we talk. “But I know he’s supposed to have a few words by now, and I figure speech therapy could help.”

“So, he isn’t talking yet. How old is he, again?” I tell her, not wanting to. “He’s twenty-one months.” “Any other concerns?”

His poor eating. No pointing. Crying when songs end. He cries in terrible despair if someone sings one of his favorite songs. “No,” I say. “No. Just the words.” We set a date and time, and I immediately start to dread the coming appointment. In moments, I am stricken with instinctual fear. What have I done?

< My Thoughts > “Crying when songs end.”

Our Sonny cannot tolerate when something ends, whether it’s a song or a DVD. So we make every effort to keep his favorites available on a ‘loop’. Somehow in the same vein, the ‘Sonny Ending/Empty Time To Panic Category’ are empty glasses, empty cups, empty food dishes, and empty or full cereal boxes. This phobia-like behavior has become lessened over the years. Apparently he finally trusts us to refill and replenish before the disappearance becomes too crushing. Smiles.

6% Somehow I intuit that I will have to scramble to keep him safe, to try to hold on to him. That our lives are about to change. The day of the evaluation, Ezra is in a good mood. He has gotten a good night’s sleep. He’s been playing all morning.

The team – a lead evaluator (whom I spoke with on the phone), a pregnant speech therapist, and an occupational therapist – marches into the house with a bag full of toys and eyes Ezra. My heart batters against my chest.

Next, the lead evaluator begins with questions, questions I will hear often during the next couple years, questions I will answer again and again:

Does he tantrum? Um, sometimes. He’s one (or two or three). Don’t all one-year olds (or two-year-olds or three-year olds tantrum?)

Does he cry when you take a toy from him? I suppose so. I don’t generally take his toys away from him.

He doesn’t say “Mama” when he wants you to come to him? No. He has no words.

Does he like to spin around? Yes, of course. Don’t all children?

When he spins, does he grow dizzy? I think so.

But do you know for sure? I guess not, no.

7% By the time a half hour has passed, Ezra is full upset. He runs toward me, sobbing. “Mama!” he calls.

I see he says Mama, the lead evaluator says without emotion, while Ezra clings to me. She jots this into her notebook. I hold him, his small, soft body, and nod, wanting Ezra to gain this one positive mark today.

When they finally leave, I put Ezra down for his nap and then I sit on the couch and cry. I call Michael. “Why are we doing this?” he asks. “To be a good mom, I have to help him.” I have to pull myself together.

We have another evaluation coming up in just a couple months, this one with a private hospital’s rehabilitation center, which is covered by our insurance. I want Ezra to receive as much speech therapy as possible.

Early intervention warned me that their budget rarely allows for therapy more often than every other week. I haven’t yet come to know that the world will not welcome my child.

Ezra watches the fish in the aquarium. I crouch down with him and point out the different fish, modeling for him the words. “Blue fish. And there! A yellow fish. So pretty.” He stares into the tank. I just found out a few weeks ago that I’m pregnant again. I feel uncertain about having another baby.

We received a copy of Early Intervention’s report. How can I describe what it feels like to read such a document about my son? Substandard scores. How can I explain the pain? He is only doing about 10% as well as other kids his age. He is in the bottom percentile, not even on the charts.

9% “Lots of children look fine, but they’re really not,” says the woman evaluator with the emotion of a robot. I wish I could formulate what to say. It’s taken me years to know what to say. “Yes, he does a lot of thing differently from other kids his age but there is nothing ‘wrong.’”

< My Thoughts > “…but there is nothing ‘wrong.’”

This is where parents may find themselves on the ‘slippery slope’. Bonnie Zampino (2016) writes – “We aren’t aware (of what ‘some’ autism looks like), not at all. But, we can open our eyes and understand that all autism isn’t about the high functioning child who is “quirky” but okay to be around. Neither is autism about the six-year-old who can play Piano Man better than Billy Joel. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.”

Autism can be some of the things that Sonny does, such as self-injurious behavior (SIBs) that is compulsive, ritualistic, and some sort of stimulation or communication. Before finding a therapeutic dosage of medication to help him, he would also strike out to bite or hit others. He would stick a finger in his eye, poking and poking until restrained. There are other undesirable and even dangerous behaviors, which I will not go into. I’m sure you get the idea of how frightening this can be.

9% I will always be considered a wayward mother. I scoop him up and we head toward the exit. I call Michael. “Kerry,” he says. “Do you hear how ridiculous that is? Ezra’s not talking yet, that’s all.” All I can see is her disapproving face.

A few weeks later, the report arrives in the mail. I throw it on the kitchen counter, unopened, and leave it there for a few days. I already know what’s in it.

10% A friend who is also a child therapist tells me, “You may have to accept that he’s developmentally delayed. But he’s not autistic.” Yet a small part of me – that part I used to trust but now question relentlessly – knows…

Early Intervention sends another therapist. His name is Dave. He sits on the floor with Ezra. He says to me “He’s doing some really neat things here.” Dave beams at everything Ezra does, but he will only be able to come every other week.

11% The next time Dave visits, I ask him if he knows any private speech therapists. He tells me about Patti, who, he says; he would want working with his own children.

Patti and I chat first on the phone. I like her immediately. Our insurance won’t cover Patti’s sessions, but I set up appointments with her anyway. We’ll just have to figure it out.

I also have to find an occupational therapist, because I’m quickly building awareness that Ezra has issues with eating. When he began to feed himself, he pinched Cheerios between his pointer finger and thumb and pressed them to his lips. But now he won’t eat anything but organic cheese puffs, cookies, and pizza. He does eat sand, clay, and paper. Even dried twigs and muddy leaves.

Eventually I’ll call this what it is: pica, a childhood disorder characterized by compulsive and persistent cravings for nonfood items, such as mud and paper. Pica is common among children with autism.

< My Thoughts > “Pica is common among children with autism.”

Pica behavior usually decreases with age, however adults with the combination of severe Autism Spectrum Disorder (ASD) and Intellectual Disabilities (ID) may still engage in this dangerous and challenging behavior, according to Matson, et al. (2012). They go on to say that the underlying causes of this disorder and impairment of daily functioning and poor impulse control, are still unknown, today.

Hirsch & Myles (1996) tell us that the name ‘pica’ originates from the Latin word for magpie, a bird known to pick up non-food items to satisfy hunger or curiosity. They sound the alarm that this “abnormal craving for non-food items such as paint, dirt, clay, grass, paper, even glass and small batteries can, and do, result in hospitalization and even death.” For instance, swallowing multiple magnets can cause them to engage, closing off parts of the intestine or bowel, resulting in tissue perforation and death. Child may only experience flu-like symptoms.

Further, these authors explain that the Pica Box can be successful when used as an intervention to reduce, control, or eliminate this behavior. With hyper-vigilance, in a controlled setting, when the child shows an interest in eating non-food items in the environment, they are offered safe items which mimic the chewy items they crave.

​The pica box contains substitutes such as beef jerky for tree bark, raisins or Grape Nuts for dirt/mud/sand, marshmallows for cloth items, clean wash cloth to suck on. If this therapy works, it can save the child from severe illness, poisoning, broken teeth, mouth lacerations, or even death. An indicator that the child is about to look for a non-food item is they sometimes start scavenging around on the ground or floor, mouthing toys, beginning to breath rapidly and make low throaty sounds.

11% I worry, and worry. It’s impossible not to. Pregnant with my second baby, I have genetic testing done.

12% Then they do an ultrasound, where it looks like everything is normal. Finally, they take some blood. I don’t think about politics. I don’t think about autism, which can’t be detected through blood or ultrasound. Not yet.

I’ve birthed one autistic child – if indeed that’s what Ezra is – my chances of having another one increase. I can’t think about it. I can’t go there.

I won’t have him diagnosed. Why? You must be wondering. Why not just find out for sure? Because I wouldn’t believe it. Because he’s young enough that development is too variable. Because no one seems to have a clear grasp on what autism really is. Because right now everyone and their brother is being diagnosed with autism. And, because I’m not ready.

16% Ezra has some words now. He says the word “more” and he touches my belly and says “baby” and he can say “ball” and “car” and “please” and “book.” He learns more sign language from his video. He also can verbally put a few words together, at our urging: “Read book.”

When he reaches for my hand to try to pull me somewhere, I teach him to say, “Come, Mama.” It sounds like “Um, Ama” when he says it. Dave, the speech therapist, is mightily impressed. He tells me, “This guy is going to be a talker, I’m sure of it.” I ask him to say it again, to tell me why he says that. I want someone to tell me my son will be okay.

I buy a few books on autism. Just a few for now. I am most moved by Stanley Greenspan’s book, which describes Floortime, something I realize I already do with Ezra. It engages the child by allowing him to lead. So, for instance, if Ezra pushes a car along the floor, as he often does, I take another can and crash it into his. Always, Ezra laughs, and often it prompts him to say “more.”

Floortime is a comprehensive program for infants, young children and families facing a variety of developmental and learning challenges. The program is called Floortime because you follow the child’s lead, getting down on the floor when they do. The whole family can learn to join in the child’s world, thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities.

Here is one small example of beginning ‘shared attention’ and beginning ‘engagement’ which takes place on a little island (on the floor). The child is alone on the floor playing with his favorite toy when the cat-and-mouse game begins.

Someone (mom, dad, or sister) gets down on the floor with the child and engages them by touching the toy or placing some kind of obstruction (a hand) in front of the child’s movement. Eventually the obstruction is placing the toy behind a door. He looks back at you then gets up and bangs on the door.

“Should I help you?” you ask. He pulls on the door. “Open?” you ask? Here the child is cued to sign or say “Open”. Thus, challenging the child by moving him up to a higher level of relating, communicating, and thinking.

Many parents, teachers, and other professionals like this program because it is designed to be family focused. It’s intended to allow the family many new interactive hours of enjoyment with their formerly reclusive child, helping the child in all settings and environments. There are different Floortime levels and licenses obtainable at a cost, but you can probably find someone in your child’s school who can get you started for free. Smiles.

17% We go to the birthday parties of kids from the moms’ group. At one, a child sits coloring a picture, and Ezra toddles over and takes a crayon. “Ee ee ee!” the little girl yells, so I take the crayon from Ezra and hand it back to the girl.

Then Ezra walks right into the middle of a game a group of kids are playing. “Hey!” they yell. I steer him away. Then he reaches for an ornament hanging from the Christmas tree they still have up.

“I’m sorry,” I tell him. “You have to put that back.” I take it from his hands and hang it back up myself. He walks on, looking for something he’s allowed to do. I stay behind him, my eyes on everything he does.

The other parents mingle. They drink their wine and chat, letting their children play. I wish I could do the same. After a while they sing the birthday song, and I tense up, afraid Ezra will cry hearing this song he knows sung out of tune, or just not quite the way he wants.

He doesn’t cry, but he does pull me outside, way from the singing and festivities, and where he can rub his hands on the mud in a little puddle near the side of the house. I can see the party through the sliding glass door, and I can’t help but feel frustrated and alone.

Why should anyone else miss out on the fun if they don’t have to? I have to. That’s the simple truth. But it’s also the reason I stop going to these parties. My friends also tire of me.

Not only is Ezra’s behavior not working for him, it’s apparently not working for mom either. Severity of behavior, amount of support, temperament and personalities involved all contribute to parents either becoming isolated or seeking intervention. Then there is this… as soon as he goes to public school his ‘behaviors’ will be noticed.

Retrieved from WebMD Archives, online – Autism in the Classroom, by Kelley Colihan says that parents in denial tell her, “School just doesn’t get my kid.” Another said, “Since he’s been in school, my son is developing behavior problems.” She goes on to advise parents that, “When your child has Autism Spectrum disorder, school can be extremely difficult.”

17% I’m hormonal and anxious. I’m no longer counseling at the school, which took my mind off my fears about Ezra at least a little. I’m about to give birth to a baby.

Michael sees a job on the East Coast, in a Massachusetts town where we could live in my late grandparents’ condominium for free, where we’d be just a few hours’ drive from family and friends we miss, I encourage him to apply.

The company calls him a few days later, and by the following week, we’re faced with the decision to move. Obviously, moving to the other side of the country will not transform Ezra into a typically developing child. It won’t make the worry or the autism go away.

But we decide to go, and we start to make plans. Meanwhile, I have to have this baby, and I do, that night.

I hold his tiny red body, and Michael and I kiss his little eyes and nose. He has a full head of hair just like Ezra did, but Griffin’s is brown, not blond.

18% We refuse everything the hospital recommends for Griffin, just like we did for Ezra: no shots, no circumcision, no eye goop, no nothing. The angry pediatrician has us sign a release and we go home.

< My Thoughts > “We refuse everything the hospital recommends for Griffin, just like we did for Ezra…”

My granddaughter is studying to be a ‘doula’. That’s a trained professional who provides continuous physical, emotional and informational support to a mother before, during and after childbirth. She says –“Today’s parents prefer choices when it comes to newborn protocol. They find factual information in order to make an ‘informed consent’ during current birthing procedures for mother and child.”

“No shots”… Some of the choices available to parents regarding vaccinating their newborn child range from those who chose not to vaccinate, to those choosing selective vaccinations, or those vaccinating on a delayed schedule. This should be discussed with their health professionals before giving birth.

“No circumcision”… The American Academy of Pediatrics (AAP) cite – Parents can discuss the benefits and risks of circumcision and the forms of analgesia available with their doctor. Circumcision they say, is not essential to a child’s health, but may be chosen for religious, cultural, or hygienic reasons. Or, it is chosen so their son will not be different than the other men in the family. This should be discussed with their health professionals before giving birth.

“No eye goop”… Because eye infections, like neonatal conjunctivitis, in newborns are rapidly progressive and can cause permanent damage to the cornea, antibiotics are squirted into the baby’s eyes after both vaginal and Caesarean section deliveries. Some say it is fine to delay treatment for a few hours so mom and baby can have a chance to bond and breastfeed for the first time. While others don’t believe it’s necessary at all. This should be discussed with their health professionals before giving birth.

18% In the morning, Michael brings Ezra upstairs. He comes onto the bed, and I show him his new baby brother. I don’t know how this will go. Ezra, I say, “Come here, come see the baby. Do you see the baby?” Ezra ignores me.

Finally, he looks at Griffin for just a beat. “Baby,” he says, appeasing me. Six weeks later, we board a plane to Massachusetts.

Our first week in the Berkshires, we stay in a hotel. Nadine, the au pair, will join us in a couple of weeks.

We’re in way over our heads. We didn’t think this through. We were already struggling with concerns about Ezra. We are not at our best. But now we have piled on a move, another house, another world. Michael starts a new job. We don’t know where anything is. We have a brand-new baby and a child whom we don’t understand. What have we done?

19% Outside, snow pads the ground. Black, craggy trees stand against the cold white sky floating down in prism flakes to the lake below. As a child, I spent a lot of time in this town.Ezra stands at the window, watching the wet snow falling flatly to the ground. He is my child, my love, but I don’t know what it is he’s thinking about, what he needs from me at any moment. I hold Griffin in my arms. Back in my adolescence, did I imagine what my life would be? Not really. But then, none of us can know what our lives will bring.

20% Michael goes off to his new job each day, and I try to settle in. I put the boys into the car and drive, trying to find what we need. I stick to the tangible essentials.I find a store that carries Ezra’s cheese puffs and cookies. Since the move, he won’t eat pizza, the one item he ate that seemed like food.

21% My father comes to visit. He is… well, he’s an odd bird. In so many ways. He comes to visit and tells us about his day by saying, “Let’s see, I woke up this morning, and then I went to the bank, and I said hello to the teller, who was wearing a pin that had a flower on it…”

I used to think he behaved like this because he was insensitive and self-absorbed and didn’t think enough of his own kids to ever listen to what we needed. But since Ezra’s issues, I’m beginning to wonder if my father’s on the edge of the spectrum, with features of Asperger’s syndrome. Both my uncle and my father are engineers, and both are ridiculously intelligent.

32% I know most autism specialists believe a desire to gain other people’s approval is something Ezra needs to develop. I know why they think this. A lot of autistic kids want badly to make friends, but they don’t know how to go about doing it. They assume Ezra is just like all autistic children. But he isn’t. He’s his own guy.

He’s immensely self-contained. Is that the worst thing in the world? To decide he needs human relationships is badly as the rest of us do is presumptuous and arrogant. It suggests he has to be similar to us to be happy.

Meanwhile, I’m pretty sure Ezra is a lot happier than I am and most of the people I meet. Let’s be clear: Ezra won’t be like you. He won’t be like me. He’s always, always, always going to be only him.

35% Test results come back from Dr. Destroyer’s office. Ezra’s sensitive to wheat and milk. (The two things he eats.) To make sure he receives any nutrition I have to give him Frankenmilk. A pediatrician told me long ago that I should replace what Ezra eats with broccoli and steak. “Eventually,” she told me, “he’ll eat it.”

No, Ezra will put mud and dirty leaves in his mouth, before eating broccoli and steak. Years later, I’ll feel fine about my food choices for Ezra, since the gluten and dairy free diet, the most pervasive of alternative therapies for autism is based not on any scientific substantiation, but the theory of Norwegian doctor and researcher, Kalle Reichelt who believed that our children cannot completely breakdown wheat and dairy products.

36% We take Ezra off cow’s milk and have him drink rice milk instead. We blend the rice milk into cow’s milk gradually until we switch him all the way over to rice without incident.

We learn from the lab report that Ezra doesn’t have excess heavy metals. Thank God for that, since chelation, it turns out, is as dangerous as I suspected. The test results do confirm Ezra’s body has a tremendous overgrowth of candida. Dr. Destroyer prescribes the medication to treat the candida, which we add to Ezra’s Frankenmilk for three weeks. Do we see a difference? Perhaps he’s a little more comfortable. But he’s still autistic.

< My Thoughts > “Chelation therapy…”

Web MD tells us the chelation therapy is a chemical which when injected into the bloodstream through the veins, is said to remove heavy metals and/or minerals for the body. Chelation means “to grab” or “to bind.” The body can’t get rid of some heavy metals by itself; they are – lead, mercury, copper, iron, arsenic, aluminum and calcium. This therapy may not be covered by insurance companies.

All this doctor stuff pushes me to think more about the whole idea of Ezra’s being autistic. Autism is not actually a thing. It’s a constellation of symptoms. The questions that I have are more about what causes his autism.

Is it something outside of him, something that courses through his system like a virus, harming the real self? Or is it interwoven with the fiber of his being? Where is the line between helping him and negating who he is?

I’m beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.

< My Thoughts > “Where is the line between helping him and negating who he is?”

Suma, et al. (2016), tell us that early diagnosis and the severity of the child’s ‘interactive difficulties’ appears to influence what the parents do next. Seemingly, lower quality interactions and/or growing isolation between parents and child, can lead parents to look for intervention. The ‘interactive difficulties’ they talk about were problems with joint engagement and communication of shared interests. These seemed to be the greatest challenges rushing many of the 79 families in this study to find help. Ironically, parents complained that after finally deciding to get help, they couldn’t find services in their area, or had to get on long waiting lists. Ugh!

37% It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.

45% I begin to share my concerns about Ezra, about how I just want to accept him as he is, how I want him to be happy, to love life. A lot of parents like me want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We’re afraid our instincts might be wrong.

We’re afraid that we are failing our children if we don’t follow the path of participating in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are.

I believe that forty hours per week of any therapy for a child like Ezra would be more stressful than useful, at least at this young age.

I believe it is a dangerous assumption that all children on the spectrum would need the same treatment when, in reality, children are so different from one another in their abilities and challenges and behaviors.

I believe some children might be harmed by vaccines or environmental pollutants, and other children, such as Ezra were from the start who they are today and will be in the future.I believe random things happen in utero as a fetus develops, things no one could have predicted or done anything about, that lead to autism.

I believe it makes no sense to argue that one cause or another leads to autism, because each family’s experience is so utterly personal.

I believe, as I always have, that our stories help one another, even as they are different in all of these ways.

< My Thoughts > “…our stories help one another.”

To discover the rest of the story… when Kerry and Michael decide to be more honest with each other, to admit their fears, in desperation about Ezra they move back to Portland.====================REFERENCES used in < My Thoughts > are:

​Hirsch, N., Myles, B. (1996). The Use of a Pica Box in Reducing Pica Behavior in a Student with Autism; Focus on Autism & Other Developmental Disabilities; V11N4, p222-225.

​The Journey to Normal: Our Family’s Life with Autism by I.D. Johnson, eBook 2014 Edition; an Extended Review with < My Thoughts > by Sara Luker​Mom confides that sometimes Sophie asks her to "take the autism out of her brain." But, aside from her lingering 'processing problems', Sophie is doing well and is now in the 4th grade. She is quite an artist, too. Here is one of her recent drawings, titled "Rocket"... I love the details and the perspective... amazing!

(2% indicates location in the Kindle version of the book, instead of page numbers.)Excerpts from the Preface, by I.D. Johnson…2% No one ever expects their first child to be born with differences. As a mother, it is certainly something I considered, something I worried about, but never something I actually expected to confront.3% I work as a Reading Interventionist and a Response to Intervention Coordinator in elementary school. Every day, I work with students who struggle academically and/or socially. I have had experiences with children with all sorts of disabilities, to intellectual disabilities, to autism.< My Thoughts > ….because of so many differences, one may not recognize differences in their own child.Usually parent and teacher observations of a child’s differences from their peers overlap. In other words, what the parent sees at home, the teacher usually sees in the classroom. Autistic-like differences, such as: no eye contact, no peer or parent interaction, no interest in the activities of others, using gestures instead of language to have needs met, preference for sameness and rigid routines. 3% Hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance, and I can show you why it cannot hurt to have your child evaluated…The other reason I decided to write our story down is because I believe Sophie’s story is one of hope and triumph.End of excerpts from the Preface, by I.D. Johnson

Excerpts from the Introduction, by I.D. Johnson…5% …I am thankful for the lessons we have learned on our Journey to Normal. This book is written in two sections. Most of the content in both sections originally appeared on my personal blog. It has been modified and elaborated upon. The first section primarily comes from a six part series I wrote several years ago, which was also entitled, “The Journey to Normal.” I have filled in details…added in information since the blog posts were written over two years ago.In the second part of the book are stories from our life. While the first part is more of a synopsis of how we came to discover Sophie has autism, the second part will let you know a little more about what our life has been like living with autism.End of excerpts from the Introduction, by I.D. Johnson.Excerpts from, Part One: Our Journey So Far, by I.D. Johnson…6% There’s something not quite right… There wasn’t a clear point in time that I can look to and say, “that’s when I knew.” And even now, there’s been some speculation that she may not meet the criteria for autism in a few years, if she continues to make progress at the rate she is currently, which begs the question: How can she be autistic now but not be later? There is no cure for autism….< My Thoughts > “There is no cure for autism….”Recently, some autism organizations have dropped certain terms from their mission statements and/or from their references. Words that imply that a person on the autism spectrum is not ‘normal’ or valued. Words like, ‘fix’, ‘cure’, ‘struggle’, ‘hardship’. But words like ‘disorder’ are still found in many medical references. Some feel that this is the new civil rights movement. Others feel that children on the spectrum will become independent with educational and behavioral support.6% Discovering your child may be autistic often comes in the most subtle ways. It’s in the little things. When your two-year-old doesn’t look at you when you enter a room. When your three-year-old still isn’t speaking in intelligible, complete sentences. When everyone else’s children are playing together, and she is under a tree, digging for who knows what. When a frustrated teenage swimming instructor says, “Lady, I think there’s something wrong with your kid.” That’s when you start to realize…

When Sophie was a baby and even a toddler, we would enter a restaurant and she would talk to everyone. I used to say she never met a stranger. She was the social butterfly I assumed my child would be. …at 12 months, Sophie was exactly what I thought she would be.

And then something changed.

< My Thoughts > when change occurs… it might be autistic regression.

Baird, et al. (2008) tell us that autistic regression is “Commonest in the second year of life and occurs in 15 – 40% of children with autism.” “Some parents report a very abrupt change in their child’s development and behavior, while others report a more gradual change.” These authors report that the regression may be identified as loss of ‘babble’ or ‘language’. Or, as ‘plateauing’ where the child does not go on to meet developmental milestones, according to their chronological age. “One feature of this autistic regression is that it occurs in the absence of a neurological event, such as an epileptic seizure.”

7% …it was a gradual realization, too…as it often is.

…at first I made excuses…I think most parents do.

…she chooses to ignore me because she is a little diva.

…she doesn’t want to play with the other kids because she is too sophisticated for them.

…she doesn’t speak in complete sentences because I always know what she wants…and I just let her get away with pointing.

…she was just a little different and that was okay. If the pediatrician wasn’t losing any sleep over it, I wasn’t going to either.

Then, Sophie started pre-school. The differences in Sophie were apparent immediately to the staff, particularly the director. …but some of the things they said Sophie “couldn’t” or “wouldn’t” do at school, she was doing at home.

8% The teachers were very concerned and my concern was growing by the minute. And yet, still, I waited. I was pregnant with Ariel, Sophie’s little sister. I was working a lot. These are the excuses I used.

Much as you want to know what is going on with your baby, you also don’t want to know. And if you don’t know if something is true or not, you can always hope that it isn’t.

I would oscillate between “there’s nothing wrong with her,” to “what in the world is wrong with her?” and, “why did God do this to me?” Finally, when Sophie was two-and-a-half, we decided to have her evaluated.

Her differences by then were very obvious. She was hardly talking. What she said was barely ever understandable. The little social butterfly had flown away and left me with an aloof, often completely closed off child.

Even though I could see of the differences between Sophie and other children her age, I was very sure they were going to tell me she was just a little delayed and she would be fine by the time she was three.

What they actually told me took my breath away.

9% The evaluation itself was conducted by a speech pathologist and a diagnostician. They talked to me about how sweet and beautiful Sophie was, how lovely our home was, and how we were all going to have a Merry Christmas.

Then they pulled out their charts and reports.

I was waiting for them to say they were sorry but Sophie just didn’t qualify for their services.

But of course, Sophie did qualify for their services.

10% In fact, of the four areas they tested in, Sophie qualified in two of them and almost a third. She was behind in her social skills, as far as interacting with other children and adults.

And then they threw the number at me that made me stop breathing.

…cognitively, she (Sophie) is eleven months behind. I had to ask for clarification. My child was very bright. She could sort objects by color. She could problem-solve like no other two-year-old I’d ever known…

10% The assessment they had administered was called the Performance Assessment for Language Students, (PALS). They admitted that the test was heavy on the oral language skills, and it is possible that she could be just fine cognitively, but the test indicated that she wasn’t.

They said that most of the scores were based on her (Sophie’s) ability to answer questions and sing songs, recite nursery rhymes, etc. I said, “But she can’t talk.” She was cognitively behind because she couldn’t sing “Twinkle, Twinkle, Little Star,” tell them her name or which picture was cookie.

< My Thoughts > “The assessment they had administered was called the Performance Assessment for Language Students, of PALS. They admitted that the test was heavy on the oral language skills, and it is possible that she could be just fine cognitively, but the test indicated that she wasn’t.”

As a teacher and student of what’s out there, I was surprised that the professionals administered the PALS test. I just seemed to me that there would have been more appropriate assessments for the first time out with a non-verbal child. Hmmm…

11% I still don’t know if they believed my child was really that far behind or if they understood that you cannot judge a non-verbal child’s intelligence based upon a verbal exam…

“She hasn’t developed her ability to communicate verbally.” “Yes, but why?” “Well, when she hears speech, she doesn’t understand how to process it.”

“I understand that. But what causes that?” “It’s some sort of developmental delay.” And so the circle continued.

At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?

< My Thoughts > “At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?”

One of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the ‘disconnect’. As diagnosticians, the implication is that the parent should be pleased to get an autism determination which would provide services for the child. One of the problems is that there is very little, if any, regulation when it comes to testing and qualifying for programs. My advice is…Parents, do your homework!

As the mother, she wants to know the cause. Did she do something wrong? What can she do to correct the problem? As a teacher, she wants to know how to proceed with an appropriate intervention. As a community member, she wants to know what is available to her child and how to prioritize needs.

As a human being, she wants to know how to ‘fix it’. We humans are problem solvers by nature. When something seems broken or ‘off’ somehow, you want to fix it.

11% They were very understanding and assured me that everything was going to be just fine. She would qualify for speech and occupational therapy services.

We would have six month of therapy through Lifepath Systems until Sophie was three years old. At that time she would fall under the jurisdiction of the local school district, which I happened to work for.

11% Despite the fact that the PALS (scores) showed that Sophie was behind in cognitive and linguistic skills, neither of the professionals mentioned during this initial evaluation that they felt that she may be autistic.

12% Let’s face it, it’s a lot easier to get along in this world if you can speak and understand verbal communication. So, why would I want my child to try to navigate in life without those basic skills?

Of course I want her to continue to have all the amazing gifts she has. Sophie is extremely gifted in many areas, especially when it comes to math and spatial reasoning. I’ve literally watched in amazement as she has put together complicated puzzles quickly, just by glancing at the shape of the piece she needs next…she doesn’t even need a picture.

< My Thoughts > “I’ve literally watched in amazement as she has put together complicated puzzles quickly…she doesn’t even need a picture.”

Surprising talents and strengths are reported in studies of Meilleur (2015), state the prevalence of Special Isolated Skills (SIS). These are exceptional strengths or talents which appear suddenly, are somewhat of a mystery. Having SIS may be dependent upon exposure and materials available in the child’s environment. These strengths and talents also seem to increase with one’s age; and are more common in girls than boys with autism. Some SIS won’t surface until adolescence.

There also seems to be a genetic component, but some ‘performances’ may be the result of independent mechanisms. Mottron, one of the authors of this study believes that this is explained by the way the brain allows for or approaches tasks. She calls this a “regional cerebral synaptic response”, or how plasticity in the brain reacts to the environment or to an event. Some authors on the subject refer to the appearance and prevalence of these talents and strengths as a sort of ‘adaptive functioning’. Lots to consider here. Smiles.

20% The school psychologist who performed the autism evaluation was extraordinary. Of all the people I have met along this journey, I feel that she was the kindest.

21% I braced myself for the inevitable truth. Except she couldn’t tell me that Sophie was autistic. Because the evaluation did not conclusively demonstrate that Sophie was.

Sophie was borderline in three qualifying areas – Autism, Asperger’s, and Pervasive Developmental Disorder. It indicated that she may possible qualify as being autistic in the future, if she did not continue to make progress, but based on her age, they could not label her as being autistic, at that time.

I felt like this was a victory! I had fully expected to be told my child had full-blown autism…

22% Sophie’s teachers were convinced that she would benefit greatly from the autism unit at their campus, also known as the Structured-Teach Classroom or STC. I was afraid. I didn’t want Sophie in the autism unit. I didn’t want her labeled as autistic, particularly if she wasn’t. I wanted her to have good role models, typically developing role models, verbal role models. I was afraid she would stop making progress in that setting.

The school psychologist who had performed Sophie’s autism evaluation suggested that we look into hyperlexia.

It is not a stand-alone diagnosis, but it was possible this was part of Sophie’s gift.

Hyperlexia is the opposite of dyslexia. It has different forms, like all conditions, but it is generally characterized by an over-emphasis on a fascination with letters, letter sounds, numbers, reading, and the alphabet it general.

“This sounds like my daughter.” Unfortunately, very few people are familiar with hyperlexia and there is no “treatment” program for hyperlexia.

< My Thoughts > “…very few people are familiar with hyperlexia.”

Hyperlexia is when a child’s natural ability to read is far above what is expected for that age level. The trade-off is that the child often has difficulty with verbal skills and may even need to have everyday communication put in written form for better understanding. Some children are taught to follow a written ‘script’, in order to interact with others socially. Retrieved from: www.csld.org/HyperlexiaDefinition.htm.

27% …our current district has no autism unit so Sophie would be placed in a general education classroom with special education support for kindergarten. This is exactly what I had been hoping for her all along.

I wanted Sophie to have the opportunity to demonstrate what she was capable of to be given the chance to learn from her non-disabled peers and to have the same experiences any other child is given. If she couldn’t do it, then we would weigh our options. But I wholeheartedly believed that Sophie would be successful in kindergarten.

28% Sophie started off by “tasting” a few of her friends. However, it was determined pretty quickly by the school psychologist that this was a sensory issue, not Sophie intentionally harming others. There seemed to be a lot of evidence pointing toward a sensory integration disorder, which may have actually been a major issue all along. In fact, some of the experts on her team thought that it could be sensory integration disorder and not autism causing Sophie’s differences.

< My Thoughts > “Sophie started off by “tasting” a few of her friends.”

First, Reguero de Atiles, et al. (1997) caution parents that “Children biting other children is a common and difficult consequence of group child care.” They go on to say that there are four areas of represented research – Incidences of biting, reasons for biting, reactions to biting, and coping with biting behaviors. Some children, they believe appear to become overstimulated when other children are close. Incidences can be distinguished between basic immaturity and possible sensory integration dysfunction. Reasons for biting behavior can be due to frustration, lack of communication abilities, sensory reaction, a form of imitation, teething, or just curiosity. Some believe that it may be a natural response to frustration of demands, an attempt to make things happen more quickly, a reaction to discomfort or a simple lack of self-control.

As a teacher, in one of my first autism classes, I sat at a table with an eight-year-old student. I reached in front of him to pick up something from the table. As I did, he reached for me… pulling my underarm into his mouth. That bite mark was there for a month!

29% Sophie did so well in kindergarten. That year, people came up to me all the time and told me how amazed they were at the progress she had made.

I was amazed too. We had our struggles but eventually, she began to answer questions, tell stories, talk about her friends, and tell me what she did that day.

30% Her speech began to become more clear, though she was still confused about the tricker parts of speech, pronouns and what-not.

She became a different child. It was that year, when Sophie was in kindergarten, that I began to realize that she was going to make it.

60% Sometimes she is so upset she can’t process.

She hears what I am saying, but can’t process. It is not easy to live in our world when you have a language processing delay.

< My Thoughts > “…she is so upset she can’t process.”

Early signs of this may have been her biting incidences in Kindergarten. Just saying.

60% Sophie’s amazing teacher has figured out that phases like, “Sophie, cubby!” while pointing at her backpack usually get the right response.

There’s no amount of, “It’s okay,” or “It’ll be alright” that can get through all the jumbled up messages when you can’t understand the message and your brain is already full of words rolling around.

60% < My Thoughts >“It’s okay…”

There’s no amount of, “It’s okay,” or “It’ll be alright” that can get through all the jumbled up messages when you can’t understand the message and your brain is already full of words rolling around.

If you have ever tried to learn a foreign language, you know the frustration of trying to hear the correct syllables joined together to understand what one word is, let alone a whole phrase uttered urgently. That’s what it must be like when one has a language processing delay.

This is where having a silly song to sing, or reciting the alphabet, or clapping to the hand jive can help the child break the looping response. Giving the child a chance to catch-up to what is happening in real time can help them learn to self-monitor their thoughts processes. Keeping them in the moment.

60% So, what do we do? A lot of times counting helps Sophie to calm down. Counting is consistent she knows what number I’m going to say next. She knows what it means. It’s predictable. It has a pattern. She likes it.

Today, she dropped her cookie on the floor. She cried and cried. I picked it up….and gave it to her. She started eating the cookie but continued to cry. Her brain still hadn’t processed that the event that had made her cry was over and she could be happy again… sometimes she is so upset she can’t process.

< My Thoughts > “Her brain still hadn’t processed that the event…”

Sonny has a seizure disorder, so it’s very difficult to know whether the tantrum he feels compelled to throw has to do with something in ‘real time’, or something that happened yesterday… or, a seizure manifestation. Hmmm…

60% …distractions work to a point. They worked better when she was younger. It takes longer now for her to move on to something else.

Sometimes I can “break a loop” if you will, by giving her something else to do.

68% I’ve been pushing her a lot lately, I feel like she isn’t living up to her potential. I know as a teacher, what it’s like to work with a child when you’re not sure what they are capable of. If you meet resistance, you’re more likely to stop or let up.

With Sophie, resistance is constant and relentless. Every time I push, I get ridiculous laughter, animal noises, howling, unintelligible jibber-jabber, or physical movement away from where we are working.

69% I have got to figure out a way to make her understand what she is supposed to do and find another way to respond when she is asked to complete a task because I am honestly worried about how other people may interpret this response.

If I find it odd and she is my child whom I love and understand better than anyone else in the world does, how does her teacher and classmates perceive this response?

I gently took her little face in my hands, and asked her to look at me. She looked down; she looked across the room; she looked anywhere but at my face.

I finally got her eyes to lock on mine for just a brief moment. …and in that moment, I think I may have seen past the disorder and actually glimpsed the Sophie I am trying so desperately to unlock.

< My Thoughts > “…in that moment, I think I may have seen past the disorder and actually glimpsed the Sophie I am trying so desperately to unlock.”

I have heard many parents say how important it is…”figuring out a way to understand her and have her understand me.” Farmer & Reupert (2013) talk about a program that helps parents understand how autism is “a different kind of normal”. This program is all about ‘understanding’. “Understanding the nature of autism and the communication, social, sensory, play, and thinking issues pertinent to ASD.” “Understanding the difficult behaviors and how to develop a practical set of strategies.” “Understanding how to decrease feelings of isolation and parental anxiety.” This program helps parents learn from those who already understand how autism may manifest in the child.” After completing the program, on parent shared, “I feel as if I now understand what it’s like in my son’s world. I now know more about what autism is.”

69% It was only for an instant, but her expression changed, and I thought “There it is! There is the ‘normal’ we have been searching for! And just as quickly as it appeared, it vanished. She scrunched up her face again, wrinkled her nose and said something I didn’t understand.

…all of our steps are baby-steps. But looking into her eyes for just those few seconds made me think that maybe someday she will be able to tell me what was going on in her head for all of these years when she just wasn’t able to tell me what she was thinking.

71% Sophie always struggles and rebels when she begins to develop new communication skills. I just keep reminding myself that we have come so far.

When her brain gets overloaded with this information, the silly sounds and laughter take over because she doesn’t know how to process it.

Without a diagnosis, without a cause or a proven therapy regiment, it is so difficult to know if we are moving in the right direction…

…if pushing her is really helping or if I shouldn’t be pushing her so hard. It’s all trial and error, learning as we go, hoping we make the right choices, and learning from our mistakes.

72% I took Sophie to Wal-Mart with me to do the grocery shopping today.

She is in rare form today and we had a really good time.

My favorite part was when she started “reading” the grocery list.

“Okay Mommy, we need some birds and a circus and some cereal and strawberries.”

She was being so cute…she was sitting there (in the cart) talking to a very sweet cashier.

“I bet if I told this woman that my child has autism, she would be shocked.”

There was nothing autistic about my girl today.

She was cute, she was making sense, she was being funny.

73% Perhaps we’re approaching normal.

77% We are going to continue to work to extinguish undesirable behavior, at least she isn’t biting, kicking, punching anyone. No one used the “A” word and no one told me she “couldn’t” or “she’ll never.”

The bottom line is, she’s continuing to make progress and her current placement is working. She now has an amazing classroom teacher and resource teacher and phenomenal speech teachers as well. Sophie loves her teachers and works for them because she has such a good relationship with them.

77% < My Thoughts > Sophie loves her teachers and works for them because she has such a good relationship with them.

As a teacher, and as a parent, establishing a relationship with a child on the spectrum is very challenging. Traditionally, many children will work for food, but will not perform because they want to please their teacher. This is another example of how different our kids are…one size does not fit all!

77% Sophie’s speech has come so far this year because of the hard work of these amazing women, it boggles my mind to think about all of the things Sophie says now that she couldn’t say a year ago. It’s hard to believe kindergarten will be over soon but I’m looking forward to next year.

Farmer, J. & Rupert, A. (2013). Understanding Autism and Understanding My Child with Autism: An evaluation of a group parent education program in rural Australia. Australian Journal of Rural Health:21; 20-27.